Most Recent
February 2023
Q: I was diagnosed with UC a few months ago. I was put on Uceris then Stelara. I have been in remission since I started the Uceris and am tapering off. I have also been recently diagnosed with inappropriate sinus tachycardia (fast resting heart rate), which seemed to start with the UC symptoms. The cardiologist is not worried about it, but cannot explain why it is happening. I have seen that UC can cause a fast heart rate. Is this true? Should it get better if the UC gets better?
A: Sinus tachycardia can occur due to several different causes and typically is considered a response to some underlying process. These can include infections, dehydration, anemia, low blood oxygen saturation, heart disease, lung disease, pain, anxiety ingestion of stimulants, to name a few. Several of these etiologies can occur in the setting of UC, so it is important to work with your doctor to investigate and possibly address these, before a diagnosis of inappropriate sinus tachycardia is made, which is an unusual condition.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
February 2023
Q: · My son was diagnosed with a Crohn's flare. He started Remicade and methotrexate & having his 3rd infusion next week. More prednisone was also prescribed since his symptoms haven't improved (his doctor said the symptoms might also be side effects of the Remicade). He sleeps all the time, can't work, and is depressed. My son believes the Remicade isn't working and should try Humira. Do you have any recommendations for him?
A: Going through a flare is physically and emotionally difficult. Also, symptoms associated with the flare can worsen or contribute to symptoms of depression. It is recommended that all symptoms be discussed with his IBD specialist. While there may be adjustments in his medication regimen, he may also benefit from a consultation with a GI mental health provider to aid with managing the complexities of IBD. They will assess for severity of mood symptoms and help create a treatment plan to aid in improving mood, fatigue and overall functioning. To locate a mental health provider, encourage your son to speak with his IBD provider as that provider may have someone on the team or have a local resource. He can also use this directory: www.romeGIpsych.org.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
January 2023
Q: I am wondering if there are ways to help reduce my stress levels related to having a chronic illness in the workplace. Should I tell my supervisor that I have IBD? I feel overwhelmed at times at work and feel like I am not able to complete the task needed on time. I am unsure how to cope.
A: Stress can have a significant impact on our mind and body. Work is one aspect of life that can contribute to stress for various reasons. In people with chronic GI conditions stressors related to work can come from the actual job demands, while also GI-specific stressors such as physical symptoms, access to bathrooms, navigating medical appointments and more. If aspects of IBD are impacting you at work, it is likely time to identify who at work can assist with navigating your rights as someone in the work force with a chronic illness. Depending on your needs and work environment, you may be able to provide very basic information about your needs and the impact of your health on your work. You can share what you feel comfortable sharing. You may benefit from working with your medical provider and employer to complete FMLA (Family and Medical Leave Act) or ADA (Americans with Disabilities Act) paperwork to receive reasonable accommodations. Having these accommodations in place can assist with stress management by reducing some of the burden if you need a day off for the management of your health. You can find important information about your rights as a person with IBD here: https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/employment-and-inflammatory.pdf
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2022
Q: My son was diagnosed with Crohn's at the end of March 2022. He was put on Humira, developed antibodies and was switched to Remicade. He received his 3rd induction dose of Remicade on Sept 8 (his levels look good with no antibodies, and C-reactive is back to normal). He is still having diarrhea 1-2 times per day with some cramping (down from 6-7/day early summer). When should we expect these symptoms to improve?
A: Thank you for your question. I am glad that your son is feeling better, but I you are correct, true clinical remission (absence of symptoms) is the first goal of therapy. Sounds like he is responding to the therapy both by lab data (normal CRP) and symptom improvement. I am not sure how long ago he received the third dose but, he should stay at least as good, if not further improve by dose four. This is important since that is the first “maintenance” dose and is likely scheduled eight weeks after the third. Likely, your son’s gastroenterologist will be checking an infliximab level then to assure the dose is optimized for good disease control going forward.
Ultimately, the next goal of treatment is to assure healing of the lining (mucosa) of the bowel. This can first be measured with a stool test for inflammation (calprotectin) and later, by repeating imaging with an MR enterograpy (MRE) or repeat colonoscopy. Studies have shown that healing of the mucosa is associated with our best long-term outcomes, so it is very worthwhile to look for this. Also, if symptoms persist or recur, such follow up testing would help clarify whether active Crohn’s disease is still contributing.
Hope he is feeling back to himself soon!
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
August 2022
Q: My 14 year old has been in "remission" for about 1 year now and still receives the remicade infusions every 8 weeks, but with this new school year she is now experiencing sort of panic attacks/anxiety. I've made her appointment with pediatrician but looking to see if this is common in youth with an IBD?
A: There can be many anxiety provoking things that happen around back to school time for kids (schedules, lockers, new friends, school changes, etc). So, first it is important to normalize this for kids with and without chronic illness. For those with IBD, there may be some additional stressors that I would encourage you to explore with your daughter. Dr. Brad Jerson is a pediatric GI psychologist who just published a great article recently about school considerations that can impact those with GI conditions (https://www.healio.com/news/gastroenterology/20220823/back-to-school-with-digestive-disorders-parentschool-partnership-key-to-patient-support). Some of the factors to consider include bathroom access, dietary sensitivities, navigating your health with your peers and more. All of this can progress from worry to anxiety to panic if unaddressed. It is a great idea to chat with your pediatrician, and consider talking with a GI psychologist (if you are near one) or a general mental health provider who can assist with anxiety management.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
August 2022
Q: I have a 19 year old son who is in college, he is very nervous about sharing a room with someone who doesn’t understand his illness. He is not always vocal about having IBD and does his best to manage without many people knowing when he is in pain, etc. How would you recommend he handle the situation with having a roommate and living with IBD? I feel like he may be having anxiety related to this.
A: I would say that the anxiety of having a roommate for the first time is common for most college students. Normalizing this for him may be a good place to start. It would them be helpful to work on language that he can become more comfortable with around talking to his roommate (and friends) to help them understand how IBD can impact his life. While discussing bathroom issues can feel uncomfortable, once he gets the conversation about his needs out there, it will likely help to reduce the anxiety. He doesn’t have to be graphic or overly detailed but help give some context to why he may spend some extra time in the bathroom, need to use the bathroom urgently, need time for rest or eat differently. It typically takes a lot more energy to avoid these types of conversations over time than it will to have the initial conversations and hopefully have them be well received. He may also see that his roommate can be supportive and assist him when and if he needs that.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
August 2022
Q: Hello. I am a mom of a teen daughter who has been diagnosed for just shy of a year. She is often times staying in her room, avoiding friendships, and even refusing to eat at times. I am worried she might be depressed related to having a chronic illness. Are there things I can do to help as her mom? Ways to teach her to cope with her illness? Anything would help!
A: Thank you for being curious and aware of these changes in your daughter. A new diagnosis of a chronic disease can lead to many life changes, new normal and at times, fear about the future. Watching for signs of anxiety and depression are important. It does sound like your daughter is experiencing some symptoms of depression. I would recommend speaking with her gastroenterologist about whether there is a GI psychologist or GI-specialized mental health professional for her to consult with. If not, you can check www.ROMEGIPsych.org or look for a mental health provider who specializes in working with teens, chronic illness, depression and anxiety via www.psychologytoday.com or another via the Crohn’s and Colitis Foundation resources.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
July 2022
Q: After being diagnosed with Ulcerative Colitis in Oct 2021, My gastroenterologist put me on Uceris (Corticosteroid) and Lialda. I felt good with no active symptoms for 3 months. I started weaning off Uceris after that and quickly saw my symptoms come back (mainly diarrhea and blood in stool). After starting and weaning off Uceric again, my doctor wants to put me on Imuran or biologics(Humira) since I cannot achieve remission consistently. Do you have a recommendation for first time use?
A: I agree with advancing treatment to biologics or immunomodulators if there are active symptoms despite mesalamine, but I encourage you to a. Verify objective active inflammation with stool calprotectin and/or flexible sigmoidoscopy. b. Have a comprehensive discussion of ALL your medication options (what you listed are only a couple of options - besides azathioprine/adalimumab examples of other options are infliximab, vedolizumab, and ustekinumab). c. come to a shared - decision with your doctor about the best treatment for your UC.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
July 2022
Q: I have been taking Humira for a year and a half. Since starting the drug, I have had scalp psoriasis. Now, after a year and a half I'm starting to develop the same reaction. I have hives that come and go in different areas as well as some skin inflammation and after my last injection my lips ballooned until I took some Benadryl. My question is, is it possible to have an allergic to a drug like Humira after taking it for so long?
A: Yes , this is entirely possible and skin reactions can occur at any time after starting a medication. Humira can cause certain kinds of psoriasis, hives, and lip swelling in some cases. In your situation, I recommend consulting with a dermatologist, possibly an allergist, as well as your GI to determine the best course of action moving forward.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
June 2022
Q: My 12 year old son is now facing a ileo colectomy. What can we expect afterwards? How can I help to make the procedure and healing time go well?
A: Surgical intervention is a big step at any age so congratulations on being proactive in helping him (and therefore you!) through this.
First and foremost, these are great questions for you to ask your surgeon and their team. I assume you are referring to an ileocecectomy (removal of a portion of the last part of the small intestine along with the first part of colon = cecum). This is the most common surgery performed on those with Crohn’s disease. Accordingly, your son’s team likely has significant experience with this and can assist answering your questions. The hospital may also have a Child Life team and other supports—feel free to use them to get yourself educated and your son educated at an age appropriate level. There may also be other pediatric patients and their families who have been through the same experience who have volunteered to speak to others and share experiences with the Power of Two program. Feel free to take advantage of all such resources.
Most commonly, this surgery is now performed laparoscopically (minimally invasive surgery) which allows early hospital discharge and much less post-operative pain than in the past. The surgical team will lay out a plan for return to full activity which will slowly occur over a few weeks. Also, keep in mind that while the surgery will remove the bowel already damaged by the Crohn’s, it does not cure the condition and there will need to be a plan to prevent disease recurrence after the surgery. So be sure to speak with your medical team so that you are fully aware of the post-operative plan to prevent disease recurrence. Also, in addition to using medical therapy to prevent recurrence, it is recommended that a colonoscopy be performed within 6 months of the surgery to assure that the plan is effective and that Crohn’s inflammation has not recurred.
Best wishes for a rapid and full recovery!
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
June 2022
Q: My son has been on Remicade since 2013, he has Crohn’s. He has been in remission. He has had issues with acne since he started the medication. Since switching to generic we noticed he began to get cystic acne. He had to have them removed. He is 26 yrs old and is now dealing with all these cysts. Frequent visits to dermatologist, having to get 4 steroid shot in cyst. Do you think this is a side effect from the medication?
A: Thank you for the excellent question. It looks like he started infliximab around age 15 years which is a very common age for acne so this should not be seen as a surprise. However, your concern that this has persisted to this degree is noted.
Traditionally, the main medication associated with acne is steroids but it looks like his medical team has done a great job staying away from that. Whether he is receiving originator infliximab (Remicade) or a biosimilar should not make a difference here. Dermatologic issues can be seen with anti-TNF therapy and while acne is not the most common, it is a consideration here. Some of the newer biologics approved for Crohn’s affect the skin to a much less degree and he should be encouraged to have a discussion about this with his team. Additionally, since you discuss this as cystic with the need for removal from his buttock, he should at least confirm that this is truly acne and not a condition called Hidradenitis Suppurativa (HS) which is sometimes associated with IBD (especially in cigarette smokers!) and would require a very different approach.
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
June 2022
Q: After being diagnosed at 78 years old with acute colitis - the hospital and GI Doctor recommended a low fat diet. They did not set me up with a nutritionist or give me a guideline for foods. I still have a lot of gas even with just keeping my diet simple. I know I do fill up with gas if I don't eat every 4/ 5 hours after breakfast/lunch and dinner. Are there some recommendations on diets to follow or go to foods to limit gas?
A: Excessive gas could be due to numerous causes including active inflammatory bowel disease or dietary intolerances. Gas in your stomach can be caused by swallowing air when you eat or drink via drinking through a straw, consuming carbonated beverages (soda, beer), eating too quickly, or chewing gum. Limiting these behaviors and practicing regular, mindful eating may help reduce symptoms. Certain high-fiber foods may also cause gas, including beans/ peas (legumes), raw fruits and vegetables (especially those with intact seeds and skins), and certain whole grains. Sugar substitutes, or artificial sweeteners, such as sorbitol, mannitol and xylitol, found in some sugar-free foods and beverages may also cause excess colon gas. Due to the fact that various medical conditions may increase intestinal gas, bloating or gas pain, I would recommend discussing potential underlying causes with your medical provider that way you can obtain more tailored recommendations for a potential diet plan for your inflammatory bowel disease or food intolerances.
For further help finding a qualified registered dietitian nutritionist or food and nutrition practitioner who is right for you, check out: Find a Nutrition Expert (eatright.org)
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: Do you have any recommendations on how to help my child get the proper nutrition while also adhering to a special diet? I find it hard to get fruit and veggies in to his diet.
A: Some additional strategies to incorporate fruit and vegetable intake include “sneaking” them into dishes and using preparation strategies that could improve tolerance (as allowed on your child’s special diet): fruit/vegetable smoothies, juicing, pureeing vegetable soups, cooking rice in vegetable broth, baking fruit muffins, etc. When following a limited diet plan, it is key to get tested regularly for vitamin and mineral deficiencies and supplementing as needed. It is oftentimes recommended to take a multivitamin with additional vitamin and mineral supplementation as needed. Additionally, if overall intake and appetite are limited it can also be helpful to find an oral nutrition supplement drink such as Kate Farms or Pediasure to help fill in the gaps.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: Hello, my husband has UC and finds it difficult to adhere to specific diets. Anything that you find helps with people who have to eliminate so much from their diet?
A: Following elimination based diets can be challenging but finding additional recipes, eating out strategies, or meal delivery services that can assist with food prep can be helpful. Below are some helpful resources for structured elimination based diets, a recipe database for those with dietary restrictions/allergies, and meal delivery services.
Food Allergies: Safe Eats® Allergy-Friendly Recipes – Kids With Food Allergies
IBD- AID: https://www.umassmed.edu/nutrition/ibd/ibdaid/
SCD: https://www.nimbal.org/ https://gikids.org/
FODMAP: Hundreds of Low FODMAP Recipes & Resources | FODMAP Everyday Low FODMAP Diet | IBS Research at Monash University - Monash Fodmap
AIP: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/ https://autoimmunewellness.com/
CDED: https://mymodulife.com/
Meal Delivery: Daily Harvest, Hello Fresh, HungryRoot, Epicured
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: Hello, I'm 58 years old and was diagnosed with Crohn's a year ago. I've been receiving infusions of Inflectra every 8 weeks which may be helping because my calprotectin is back to normal. I will know more when I have the next capsule endoscopy. Meanwhile, I am wondering if it is normal to be very tired after the infusions. I am sleeping for hours and don't feel like I can do anything for a couple of days.
A: I agree with your work up to make certain first that the disease is in complete remission and it’s not active disease and inflammation causing your symptoms. Another suggestion could be to determine if you are getting any pre-medications with your infusions such as Benadryl which can cause fatigue and discussing with your providers if there is a -non-drowsy option you could use for premedication instead. Lastly, I would check to see if your vitamin levels have been checked especially your vitamin B12 levels. This is absorbed in the ileum which it seems may be the area of your Crohn’s disease and can commonly be low in Crohn’s patients. Low B12 is associated with fatigue and repletion of this can help energy levels. Additionally, making sure iron levels and vitamin D are replete are also critical. Crohn’s disease has been associated with a chronic fatigue even when in remission that can affect certain people. There is ongoing research in this field to better understand the causes and therefore formulate better therapies to treat it. This is a diagnosis of exclusion and would explore other diagnoses first including checking in with your primary care doctor to make sure other organ systems are checked such as thyroid. One method that helps patients is to increase exercise to 5 times a week for at least 30 minutes. This tends to increase energy.
ANSWERED BY:
Alyssa Parian, MD
Co-Clinical Director of Gastroenterology & Hepatology at Johns Hopkins School of Medicine
Co-Clinical Director of Gastroenterology & Hepatology at Johns Hopkins School of Medicine
June 2022
Q: I have had a full colectomy for my UC. I'm now experiencing some inflammation in my J-Pouch and my lower intestine. I'm currently treating with steroids but would like to also try an anti-inflammatory diet as well. Have other patients had much luck with this diet? Also, I was advised not to eat nuts after my colectomy but opinions vary. Have others been able to digest almonds or cashews post colectomy?
A: Inflammation in the lower intestine (or pouch) is common but really depends on multiple factors or why that is happening. We don’t have the best evidence for diet therapy in people with J-pouches, and there is argument whether there are diets that are truly “anti-inflammatory” to your bowels. While there are foods that people tolerate differently (nuts, seeds, fatty foods), I don’t usually have diet restrictions for my post-colectomy patients. While some things can perhaps cause more diarrhea, they don’t necessarily cause the inflammation. I would recommend speaking to your doctor prior to making any changes.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: I recently was diagnosed with ulcerative proctitis, a more mild form of ulcerative colitis. I went to see my doctor after having consistent blood in my stool but no other symptoms. I had a colonoscopy done back in September 2021 and was diagnosed with ulcerative proctitis. I was prescribed 1000mg mesalamine suppositories. I have been searching for alternative, natural treatments for my condition as I would prefer to not be on medication. Is it possible to treat my condition without medication?
A: Treatment decisions still are made on a personalized basis. Some of my proctitis patients can go on as-needed therapy, but if you are having consistent blood in the stool, no one wants that for you, and generally speaking, the risks of undertreated inflammation is much higher than any drug that you may take. However, I would recommend speaking to your physician.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
May 2022
Q: My daughter has taken Humira and is now Stelera for her Crohn’s. It seemed after her injection she develops a localized reaction at the site that last 3days. She takes Zyrtec 3 days prior and 3 days after. She takes Benadryl and Tylenol pre med the injection. She has no antibodies to the drugs and it seems it may be from the filler in the injections. Are there any medications that do not contain these fillers. Or is there another pre med she can take. At this time she is unable to Remicade.
A: I hope the Stelara is working and that your daughter’s Crohn’s is in deep remission.
You are describing a local site reaction, and these can be quite common. You are correct that this may be from the non-active ingredients (we call these excipients rather than fillers) or it could be a local reaction to the medication. One non-drug interventions that helps with this is to assure that the site of injection is rotated from dose to dose. Additionally, we have had great success with “conditioning of the injection site” by applying an ice pack for 10 minutes prior to the dose. Regarding medications, if it is not painful, she may not need the Tylenol and the Zyrtec or a Claritin may be enough to allow her to stop the Benadryl which often times causes drowsiness in adolescents.
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
May 2022
Q: My 16 year old daughter was diagnosed with UC in October. She has taken steroids and Mesalamine with no relief from the bleeding. They are now wanting to put her on Humira. I am nervous about putting her on biologics and was wondering what some of your experiences have been with using biologics? Can she achieve remission?
A: The PROTECT study was a prospective, multi-center, NIH funded study of newly diagnosed children and adolescents with ulcerative colitis (UC). Important findings of this study included the fact that 40% of pediatric UC will be maintained by mesalamine. Which means 60% of children and adolescents with UC will need biologic therapy to maintain steroid-free remission of their UC. In truth, you daughter is already on the most toxic medication we use for UC, that is, Prednisone!
In addition to anti-TNF therapy such as Humira or Remicade, Entyvio (vedolizumab) may be an option for her. This is administered intravenously like Remicade but the main target is the proteins in the bowel which assist movement of inflammatory cells from the blood stream to the intestine making the effect more specific to the bowel (“gut specific”). In addition to decreased systemic effect and being a more targeted therapy, there was a head-to-head comparison trial of Entyvio vs. Humira and Entyvio showed some superiority in this trial (called VARSITY). Officially, Entyvio is approved for ages 18+ but there is substantial pediatric experience and in light of the findings in VARSITY, we have had good success getting Entyvio for our less than 18-year-old patients.
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
May 2022
Q: My 23 year old son was diagnosed with severe ulcerative colitis. My question is what to expect after we get his current situation under control. The priority is getting him better but am wondering if he will be able to return to his job as an apprentice lineman when he is in remission. He works long hours outside in the heat? I am worried about him getting dehydrated spending so many hours in the sun.
A: I am sorry that he is having to go through this and want to reassure you that remission = normal. So your health-related concerns would be the same as for anyone else who has a demanding job. Your priorities are exactly correct—first the remission. Once that is there, he should wear sunscreen, cool clothing and stay well hydrated—same as everyone else on the line!
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
February 2022
Q: Hello. I am diagnosed with UC. I have been in an active flare for over year. My doctor wants to put me on a biological since I can not get in remission. He left the choice up to me. Do you have a recommendation for first time use?I have narrowed it down to Humira or Entyvio.
A: This really is more of a personalized decision, and depends not only on your colitis, but perhaps other problems you may have related to your colitis (ex. Arthritis or other conditions outside of the bowels). Both, however, are reasonable choices, and both are better than being on steroids long term or being in a flare all year.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
February 2022
Q: I have been on Humira for years, I have had the shots and booster for Covid. I haven't had problems till I came down with Covid before Christmas. I had 3 rounds of antibiotics and 3 rounds of steroids, monoclonal antibody treatment. Covid seems to be gone but has settled in my lungs, throat sinus, headaches. Now on another round of antibiotic and inhaler and cough meds. I postponed my Humira injections, worried to go back on because of this, advice please.
A: I’m sorry to hear that. Certainly you should talk to your lung doctor about the safety of your biologics in the setting of COVID. However, generally speaking, we do not think that your risk of getting sicker with COVID is not increased on humira.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
February 2022
Q: My son was diagnosed 10 mo ago w/ Crohn's - pretty severe inflammation but all in the bottom third of his colon. No strictures. Stelara was unsuccessful. Also tried Prednisone as well as Budesonide on top. He's trying Entyvio next. We want to avoid immunomodulators since there's lymphoma in the family, and we're even concerned about anti-TNFs. The statistics for biologics in terms of how often they are successful look bleak. I'm wondering how often it is that no successful treatment is found.
A: Keep in mind that statistics from clinical trials often set a high bar for success, so while the numbers may look bad, most biologics do help with at least an improvement in the inflammation. I think that entyvio sounds like a reasonable choice, but there are other options, including anti-TNFs. Not knowing his entire situation, lymphomas are not often genetic, so the family history, as well as the low likelihood of lymphoma would not sway my decisions. Remember that the risks for unchecked inflammation and chronic steroids in his Crohn’s is almost always higher. I would recommend further conversations with his doctor.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
February 2022
Q: I was on xeljanz from last three years and i was doing completely fine. My last scope which was held on august 2021 looked good. I developed a bloody stool again recently. I am not sure its working anymore, what should I do?
A: Bloody stool, or pain or diarrhea, is not always ulcerative colitis flaring. You should talk to your doctors to see if anything else could be going on. If the blood in your stool was for a short period, it may not be your colitis.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
January 2022
Q: I was diagnosed with Crohn’s disease 10 years ago. I’m on my 3rd biologic medication (Stelara). I’ve had a small bowel resection in 2016. I am having trouble keeping my vitamin levels up where they should be. I feel like this is a huge factor in my hair loss. I’m on a daily multi-vitamin, Vit D supplement daily and B12 shot monthly. Looking for ways to get extra vitamins into my diet. Would it be helpful to use dietary supplement drinks such as teami or orgain?
A: While supplement drinks such as Orgain can be a valuable way to receive additional nutrition, depending on the extent of your small bowel resection and current Crohn’s disease inflammation, your ability to absorb nutrients may be limited. I recommend discussing these concerns with your doctor and/or dietitian to have your vitamin/mineral levels checked and what might be best to supplement with (in the dose you need and form that you can absorb and tolerate best).
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2022
Q: I am a distance cyclist and ride over 7000 miles annually. I've been fairly recently diagnosed with UC. I feel that riding is therapeutic for me and really enjoy day long rides. I've always had difficulty staying hydrated it seems. Also, I utilize an electrolyte drink, and frequently consume sugary gels and snack bars to maintain my energy....I'm wondering if these foods exacerbate my condition and since UC is inflammatory in nature, is my inflammatory response from exercise contributing?
A: UC primarily affects the colon, which has the primary responsibility of removing water, some nutrients, and electrolytes from partially digested food. Concentrated beverages high in excess sugars draw water and electrolytes into the gut, making stools loose and unformed, and without the colon fully functional in the case of UC, this can lead to further electrolyte and fluid losses.
Your body absorbs fluid best when there is a certain ratio of sugar to salt to water. Oral rehydration solutions take full advantage of that ratio and could help keep you hydrated while biking. Ready to use products include Liquid IV, Drip Drop, and Pedialyte. A homemade recipe includes using 4 cups of G2 or Powerade Zero with ½ teaspoon of salt.
I would suggest discussing what medical limitations may or may not exist given your active disease status in terms of physical activity intensity and duration with your medical provider.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2022
Q: My 14 was just diagnosed with Crohns and it was pretty bad. He is on remicaid but has also suggested a diet in which half of his calories come from a “formula” such as boost or ensure. We are very concerned that boost and ensure have added ingredients and sugars that might not be so healthy. I have recently been looking at organic protein based powders. I sampled one today from a company called Orgain and I very much enjoyed it but wanted to be sure it met all of the requirements we needed.
A: Partial enteral nutrition is a treatment for IBD. Formula provides 30 – 50% of a patient’s estimated calorie needs. It can be used with medication to inducing remission. Patients consume formula and take solids generally while taking medication. Studies have shown that the formula used does not have to be elemental or peptide-based. The protein source from the recommended formula can be intact. Orgain and Kate’s Farms have intact protein and could be used.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
December 2021
Q: I am 53 yr old male with Crohn’s disease over 20 years ago. Had remicade 8 years ago, surgery to resection intestines over 20 years ago. started Inflectra. Been going to ER every two weeks now for past 2months. Having very bad stomach pains and can’t use the toilet after eating.. this just started happening two months ago! food is just sitting in my stomach and won’t move. When I get to ER they give me steroid and pain meds, in a couple hours I’m like new man! What could be wrong?
A: I am sorry that you have had to visit emergency room so often. I would suggest discussing with your GI doctor and getting a full re-evaluation with him/her. It seems that you improve with steroids which goes in favor of Crohn’s rather than constipation.
ANSWERED BY:
Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
Clinical Professor- Pediatrics Gastroenterology
December 2021
Q: My 17yo daughter was diagnosed with Crohn's 11 months ago. Currently being treated with Humira (since July). The last 3 1/2 months she has had several bouts with throat swollen glands. They are visibly swollen on the outside and painful to touch and painful inside. ENT thinks it is related to Crohns.GI specialist said he never heard of that. Overtime, the antibiotics do "work" but then 2 to 3 weeks later the swollen glands return.
A: I am sorry to hear that your daughter is having problems with swollen glands. Is her Crohn’s is under control? I have seen some children develop swollen glands on Humira and some of the considerations are: check Humira levels and if it is too high, consider titrating the dose. Discuss with your doctor if she should be seen by ENT and whether she needs an immunology evaluation.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
December 2021
Q: My granddaughter was diagnosed with crohns 3 years ago. She had to have a small section of her intestines removed. She has been on remicade and was doing good until her body was being covered with red blisters. Her head has such terrible psoriasis she has patches of bald spots and now has these lumps filled with pus. They switched her to Stelara and says this will clear up. How long will it take she is 16 and not happy.
A: I am sorry that your granddaughter has to go through this problem. We all realize that body image is very important at this age. Please reassure her that her psoriasis is very likely to resolve completely. It may take 4-6 months. I also recommend discussing with your doctor about seeing a dermatologist.
ANSWERED BY:
Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
Clinical Professor- Pediatrics Gastroenterology
December 2021
Q: I am scheduled for laparoscopic surgery for ileocolic resection due to Crohn’s disease. Diagnosed at age 40 with mild disease managed with pentasa and entocort for 14 years but now have strictures one of which is ten cm. Doctor is advising that I also begin remicade but is that before or after the surgery? Does Remicade have anything to do with existing strictures? Thanks I’d also like to know how the recovery is for this surgery.
A: It is likely that your disease progressed to stricture due to ineffective treatment of the Crohn’s disease. Pentasa is not approved in the management of small bowel Crohn’s disease and Entocort should only be used for < 3 months. There are several factors that go into decision making to start therapy after lleocolic resection and it shoulds like your physician has classified you as higher risk of progression/disease. They are likely suggesting you start Remicade after surgery as preventative measure. Remicade is effective drug to prevent post-operative Crohn’s disease recurrence and recurrent disease could lead to further strictures. I would suggest that you review the recovery with your surgery team, if you have laproscopic the recovery is shorter than if required open surgery. Please visit: https://www.crohnscolitisfoundation.org/what-is-crohns-disease/treatment/surgery
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
December 2021
Q: I was diagnosed with crohn's in 7/2020. I find that if I eat broccoli, cauliflower, winter squash, sweet potato, the consistency of my bowel movements changes. I'm just wondering if this is normal. Is it that my system can't handle the fiber in these vegetables? I have no problem with cooked stringbeans, zucchini, yellow squash or carrots.
A: We know that various foods can increase symptoms of gas, bloating and change bowel consistency. If you aren’t having any other symptoms than change in bowel consistency (assume you mean diarrhea) and you are tolerating this without dehydration it might just be the nature of your body’s interaction with these foods. Often times people can tolerate cooked vegetables better. It would be important to know if you have any stricturing of your intestine as raw uncooked vegetables can sometimes be problematic.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
December 2021
Q: I am a 62 year old female diagnosed in Nov 2019 with Crohn's disease. Initial treatments included prednisone, Pentasa and then Remicade infusions in May 2020. Had a bowel resection in October 2020. In July 2021 had a reaction during Remicade infusion so my doctor started me on Stelara in August 2021. November labs have the highest Calprotectin level ever, and CT scan shows new strictures developing. How long does it take for Stelara to have an effect? Or is this a reaction to Stelara?
A: I am sorry to hear that you aren’t feeling well. Sounds like Remicade was working fairly well for you however it was complicated by an infusion reaction (which we know can happen but is rare). If you are having progression of your disease on the Stelara it might be that it is too soon in the treatment course or you are under medicated, what that means is that you might benefit from escalation of therapy, but this would need to be discussed with your treating provider. They could see if they can get approval for every 4 week dosing or repeat IV loading dose, and if no improvement within the next 2-3 months then consider going back to anti-TNF therapy class with Humira and strongly consider combination therapy with immunomodulator (azathioprine or methotrexate). If you are having significant symptoms now or they are concerned about severity of inflammation they can trial short course of steroid (budesonide vs. prednisone).
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
November 2021
Q: Hi, I am a 28 year old Crohn's patient dealing with ongoing fistulizing perianal complications over the years. I have tried just about every biological drug out there (besides cimzia). But the fistulas have never cleared up and just branch further more. This was initially caused by having a resection after having an ostomy for 7 years, and the answer was to put the ostomy back to divert path of stool away from the fistula tracts. However, 7 years have gone by and there's still constant drainage.
A: This is a tough situation that requires close multidisciplinary care with your colorectal surgeon and gastroenterologist. The first step is to assess the degree of activity of the perianal fistulas as well as the intestinal disease (ie how much Crohn’s disease activity is going on in the small bowel and colon). This would involve getting an MRI pelvis to really examine the perianal area for fistula activity and abscess (sometimes with an MR enterography to look at the small bowel for activity) and a colonoscopy. If there is still quite a bit of activity despite diverting the stool, then the reality is that you may need to have a completion colectomy with permanent ileostomy especially if you have been on so many medications without benefit. If you haven’t been referred to a major IBD center for a consultation with an IBD specialist and IBD colorectal surgeon, we would strongly recommend it as this is a complex case. It is important to advocate for additional opinions – if there is consensus across the board, then that is helpful for decision making, but sometimes a fresh set of eyes can evaluate the situation and potentially identify another option. However, in truth, a surgery does seem like it may be the safest, most effective approach – remember, surgery is not a failure, it is an important treatment to help regain quality of life, control inflammation, and decrease risks of treatments that are not working.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
November 2021
Q: How do you decide between a Ileostomy vs a colostomy? This will be permanent due to a complicated anal fissula that requires removal of the rectum. My left side of my large intestine has always been red and inflamed it has always been the same section but my right side has been healthy since I began medication for my Crohn's in 2009. The risk is that I would end up having another surgery in a couple of years to remove what is left.
A: The decision is usually based on extent, location and severity of your Crohn’s disease. If the majority of your colon is involved, then an ileostomy is typically performed due to issues related to inflammatory burden, colorectal cancer risk and blood supply/technical issues related to creating the ostomy. If a limited amount of your colon is involved (especially limited to the sigmoid colon or rectum, and the rest of your colon is normal as well as the small bowel, then a colostomy may be performed. This is a multidisciplinary decision based on careful review of your IBD history, medication use, body type, weight, and prior surgical histories. Make sure to consult with a colorectal surgeon who has expertise in IBD surgeries and, if there is uncertainty, sometimes it is helpful to get an additional opinion at a major IBD center.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
November 2021
Q: My 22 yr old son is a college student and takes Entyvio infusions for Crohns. I’m concerned and not finding thorough answers to whether or not he should be vaccinated for Covid. And if so, which vaccine is recommended. What are others doing in similar situation?
A: He should be vaccinated for COVID. Back in April 2021, the International Organization of IBD (which is a panel of international experts) said that we should vaccinate IBD patients with whatever vaccine we can first gain access to. All the 3 vaccines available in the US (Pfizer, Moderna and Johnson and Johnson) are fine in IBD patients. They all will need boosters as well. Of note, the response to the vaccine will be decreased by being on Entyvio, but this still confers your son a level of protection he would otherwise not have without the vaccine.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
November 2021
Q: I'm on mesalamine for crohn's. I've had polyps removed in the past. I battled uveitis the past year and my last colonoscopy showed 2 deep ulcers. One in the colon and a smaller one in the small intestine. I did not take the medication faithfully since I don't experience much pain. Would staying on mesalamine faithfully or at a higher dose help heal the ulcers? Would a bland diet help in the healing?
A: Mesalamines for Crohn’s have limited utility. The deep ulcers usually reach below the mucosa (the inner layer of the colon) but the mesalamines are solely mucosal agents. In my opinion, Crohn’s patients need biologics for optimal management. This is more important than a bland diet. I would stop the mesalamine and try a biologic to prevent uveitis recurrence and ideally heal the ulcers as well.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
October 2021
Q: How does one find the proper nutrition plan when you have Crohn’s & Hashimoto’s. Not only that but I have issues digesting meat, I’m gluten sensitive, lactose intolerant & I was first diagnosed w/ IBS-C (emphasis on C) I’ve gone in circles for 6 years trying to figure out the nutrition by myself & my brain is fried. I’ve also done the autoimmune protocol several times & now I’m here.
A: Nutrition therapy for people living with inflammatory bowel disease is not a “one size fits all” approach. What might work well for one individual might not work for another which is what can be quite frustrating for patients searching for a diet plan. Due to your underlying gluten sensitivity, IBS, and lactose intolerance, it might be helpful to focus on whole foods. Some Crohn’s disease patients have had success with whole food-based diets such as the Crohn’s disease exclusion diet. It models some of the components of the autoimmune protocol but is not as restrictive up front and serves as a maintenance versus elimination- based diet. The whole foods approach aims to reduce exposure to foods thought to cause intestinal inflammation, change the microbiome, alter the mucous layer in the gut, or change intestinal permeability. This diet includes fruits, vegetables, meats, complex and simple carbohydrates. If animal- based protein is difficult for you to tolerate, plant-based protein sources could serve as an alternative. This diet plan avoids gluten, gluten free baked goods, dairy, animal fats, processed meats, products containing emulsifiers, canned goods, and packaged products with an expiration date. To promote bowel regularity in the setting of IBS-C, it might be beneficial to discuss adding in fiber, additional hydration strategies, or probiotic supplementation with your medical team. Finding an outpatient dietitian specializing in IBD care could also serve as a helpful resource for tolerance follow up.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
October 2021
Q: I have Crohn's disease and have already had two surgeries. I am currently taking Stelara every 6 weeks which is not strong enough. So my doctor has added Budesonide. I am still having problems even though I take both these medications and eat basically grill chicken and salads. I can not figure out what options I have when it comes to what to eat. I am getting burnt out on grilled chicken. Can you help with some different food options?
A: Some general recommendations to help include seeing a dietitian with expertise in IBD, getting tested for vitamin/mineral deficiencies and discussing ways to supplement with your healthcare team, drinking plenty of fluids, keeping a food journal to pinpoint problem food items, and trying to slowly increase dietary variety. While everyone’s IBD is different, these are some of the most commonly reported “problem” foods for individuals with active IBD: foods high in insoluble fiber, foods with sugar, artificial sweetener, and sugar alcohols, lactose rich foods, “gassy” cruciferous vegetables and uncooked vegetables/fruit, high fat/greasy/fried foods, caffeine, and alcoholic and carbonated beverages. Some potential foods to include during a flare include: diluted juices, smoothies, pureed vegetable soups, applesauce, canned fruit without added sugar, banana, pumpkin, oatmeal, cream of wheat, plain chicken, turkey, or fish, cooked eggs or egg substitute, mashed potatoes, rice, or noodles, white bread, and oral nutrition supplements. In general, eating smaller, more frequent meals may also be helpful.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
September 2021
Q: Hello, I was just in the hospital a few weeks ago. The doctor diagnosed me with Colitis and my questions is "What diet would you recommend?". I am writing down what I eat, but it's minimal since now I'm afraid to eat. I cut out meats, coffee, hot sauce and alcohol. What vegetables are ok to consume and which do I avoid? I appreciate any feedback.
A: Deciding what to eat and recommending what to eat can be challenging for those with IBD. Since everyone’s IBD is different, there is no one single diet or eating plan that will work for everyone with Crohn’s disease or ulcerative colitis. Dietary recommendations must be tailored just for you – depending on what part of your intestine is affected, what symptoms you have (such as, diarrhea or constipation), the status of your disease, whether you are in remission or having a flare, as well as the presence of any nutrient, vitamin, or mineral deficiencies which your team can assess. Seeing a dietitian with expertise in IBD can also help with this assessment. While everyone’s IBD is different, these are some of the most commonly reported “problem” foods for individuals with active IBD: foods high in insoluble fiber, foods with sugar, artificial sweetener, and sugar alcohols, lactose rich foods, “gassy” cruciferous vegetables and uncooked, raw vegetables/fruit (especially those with tough outer skins or seeds), high fat/greasy/fried foods, caffeine, and alcoholic and carbonated beverages. Try slowly introducing new food items, even one at a time and eating small, frequent portions (i.e. 5-6 smaller portions if 3 big meals per day is difficult). Keeping a food log like you describe of what you eat and how you feel can be a helpful way to figure out what diet might work best for you as the best diet is one that meets your nutritional needs, while helping you better manage your IBD symptoms.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
September 2021
Q: I am recently diagnosed with UC but have had flare ups for the past year. I had a gastric bypass 7 months ago and did not have any UC symptoms until 5 months in and am in a nasty flare now. I have been researching different diets (SCD and Low FODMAP) but there are several parts that contradict my weight loss surgery diet. How do I find the right diet for me and are there online resources available to help? Is there anyone that specializes is both WLS and UC?
A: The low FODMAP focuses on reducing FODMAP carbohydrates which can be poorly absorbed in the small intestine and thus may be broken down and fermented by your microbiome producing excess fluid and gas. This is actually a diet that has been primarily studied in IBS – irritable bowel – which is different than IBD. The Specific Carbohydrate Diet has been popular among IBD patients due to growing research following the book “Breaking the Viscous Cycle” as well as its structured approach. Researchers from the DINE-CD study compared the effectiveness of the SCD against the Mediterranean diet and found statistically similar rates of symptomatic remission in Crohn’s Disease patients. The Mediterranean diet may be easier to follow for some and can be less restrictive than the Specific Carbohydrate Diet which may make it preferred for patients. The post-operative bariatric maintenance diet (phase IV) aligns with most of the Mediterranean diet principles such as recommendations of lean meat, poultry, pork, and fish, low fat dairy products, low fat starches and whole grains, and cooked vegetables and fruits. If you can't tolerate 3 meals daily, 5-6 smaller meals daily may be better tolerated as well as separating liquid and solid food intake. Because following a therapeutic diet, experiencing active IBD, and having a surgical history of RYGB puts you at increased risk for vitamin/mineral deficiencies, it’s important to stay in close contact with your healthcare team to make sure you remain nutritionally healthy. The Crohn’s and Colitis Foundation has a Diet & Nutrition Page that can be a helpful resource for patients to stay up to date. A registered, licensed dietitian preferably with experience in bariatric surgery and inflammatory bowel disease should be able to tailor nutritional recommendations specifically for you and your needs.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
August 2021
Q: I am a 71 year old female and have just been diagnosed with ulcerative colitis. What would be the best multivitamin for me to take and also the best probiotic? I am diabetic. Thanks
A: I am sorry to hear about this new diagnosis. It is important that you work with your health care team to manage your disease. I recommend that all patients take multivitamin if you are 71 recommend Centrum Silver as a good option as long as approved by your treating physician. We don’t typically recommend probiotics as treatment of disease with ulcerative colitis (limited evidence). The best thing you can do for your gut microbiome (the bacteria that live in your gut) is to eat a well balanced diet (Mediterranean diet) high in fresh fruits and vegetables and lean proteins and low in processed foods, sugar.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2021
Q: My son has Crohns has had it 10 years he is 17 years old. He has been on Humira but it didn't work for him. Has just started Stelara. He has been having like a mucus discharge for several months. His doctor has done a colonoscopy and nothing showed on that other than small Crohns ulcers but was doctor said they wouldn't be causing that drainage. Wondering if there is anything you all have heard even diet changes that could help this.
A: If there is discharge in his underwear he may need an MRI of the pelvis to make sure he doesn’t have a perirectal fistula.
If the mucus is in the stool, that could be a number of things including inflammation – I would start with a fecal calprotectin level, and if this is elevated then the ulcers are causing the mucus. If he just started Stelara I would wait max 16 weeks after starting to see an improvement, and if I don’t see one I might see if he needs to switch again – not everyone responds to every biologic and the rate of response decreases after you failed one.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
August 2021
Q: I am scheduled to have a laparoscopic small bowel resection to treat a fibrotic stricture. I've been dealing with constipation, bloating, sometimes severe abdominal cramping. I'm curious, assuming the surgery goes well, how much better should I expect to feel once I recover?
A: If your stricture is the cause to your symptoms then after the recovery period you should have improvement in those symptoms. Depending how much small bowel they have to resect and whether it involves the ileocecal valve and they have to resect that as well. Some people after resection will have increasing stool frequency (diarrhea) which is thought to be due to bile acid malabsorption and can be treated with bile acid sequestrant therapy.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2021
Q: I was diagnosed with mild to severe Crohns in the small bowel in 2004. I have been on Humira since 2005 but lately it seems like it isn't controlling the symptoms like it was at first. Often I am having symptoms the day after injecting the Humira. Is is possible that a medication stopped working, requiring a change in meds?
A: Yes, this is entirely possible. There are experts who think the average lifespan of a biologic in most patients is 2-3 years, so this is already very long on Humira. Your doctor should check your Humira level and esp your antibodies to Humira, as it is possible that you developed these while taking this medication. If this is the case, we can occ increase the Humira dose but more often we end up switching the drug altogether. The good news is that there are more options since 2004 and the injections are by and large less frequent.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
August 2021
Q: I have been on biologics for over 20 years, mostly Remicade. I have suffered from allergies (environmental) my whole life. Today I just had allergy tests and tested negative for everything. This is the 2nd time this has happened in the past 20 years, even though I know I have allergies. Could this be a side effect of a biologic? I suffer from chronic sinus issues and infections, which are very common with biologics.
A: Treatment with Remicade isn’t associated with increase in allergies, or at least hasn’t been reported. I would work closely with allergist regarding what could be causing your allergy symptoms (allergic rhinitis is a common cause). However chronic sinusitis should be evaluated with ENT and consider imaging as this could be due to sinus polyps/sinus obstruction and can be treated. Anti-TNF therapies have been associated with rare risk for chronic sinusitis. We have to weigh the risks and benefits of therapy, sometimes if patients have elevated Remicade levels we can reduce the dosing/frequency and improve some of these rare complications of therapy.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2021
Q: I’ve been reading a book Plant Paradox for patients with UC? Is a plant-based diet beneficial for ulcerative colitis patients? What are the pros and cons?
A: Most recent scientific research has focused on the semi-vegetarian diet in mostly Crohn’s disease. A small study out of Japan suggested that patients who followed a semi-vegetarian diet were less likely to experience disease relapse than those who were eating a more meat-heavy diet. There has been lesser research done on semi-vegetarian or plant-based diets in UC. There is limited data suggesting that there might be benefits to following a plant-based diet in combination with medical therapy in cases of mild UC.
It is important to note that plant-based diets are traditionally higher fiber. Since fiber is a primary fuel source for colon cells and in turn the gut microbiome, eating a fiber rich diet can have a number of health benefits. A plant-based diet can normalize bowel movements especially in constipated patients and help normalize stool in patients with diarrhea. However, tolerance to fiber sources may vary from patient to patient especially in cases of active disease. Those following a strict plant-based diet, especially vegans, may be at risk for additional nutritional deficiencies such as vitamin B12, vitamin D, calcium, and iron.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: I am a 71-year-old female and have just been diagnosed with ulcerative colitis. What would be the best multivitamin for me to take and the best probiotic? I am also diabetic.
A: While there is no one size fits all approach to IBD nutrition and vitamin/mineral supplementation, having UC does put patients at risk for certain nutrition deficiencies. Some of the more common nutrient deficiencies include folate, magnesium, zinc, iron, potassium, Vitamin D, and calcium. It is very important that before taking any vitamin or dietary supplements, that you first discuss it with your doctor or your dietitian. While most patients may benefit from taking a daily multivitamin/mineral supplement, supplementation needs vary person to person depending on medical and surgical histories, medications, and nutritional status. Identifying the best brand of vitamins and supplements is challenging because the Food and Drug Administration (FDA) does not regulate the vitamin and supplement industry, so I generally recommend products that have been USP verified and discussed with your medical team.
There are numerous live micro-organisms that may improve the balance of good versus bad bacteria in IBD including E. Coli strain Nissle 1917, Lactobacillus, Bifidobacterium longum, and VSL#3. However, it’s important to talk to your doctor before starting probiotics, especially if you are a young child, older adult, or have a compromised immune system. Dietary sources of probiotics include yogurt, kefir, miso, and tempeh.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: I have microscopic colitis and struggle with frequent diarrhea. I use OTC anti-diarrhea medications as needed. I want to take a more natural approach to controlling diarrhea. What are some foods or complementary therapies that can help control diarrhea?
A: It’s important to drink plenty of fluids to prevent dehydration such as broths/bouillon, fruit juices (diluted as needed), diluted Gatorade or G2, Pedialyte (or other oral rehydration solutions), ginger ale, and water/coconut water. Try limiting caffeinated and/or carbonated beverages, if gas or cramps occur. Try avoiding sugar alcohol (mannitol, sorbitol) containing beverages or foods if symptoms worsen or continue. Certain soluble fibers can help with diarrhea by absorbing excess water in the gut. This can be found in both soluble fiber supplements (such as psyllium) and via dietary sources. These starchy foods include items such as bananas, rice, applesauce, potatoes, white toast, noodles, and oatmeal. Avoiding insoluble fibers such as the skins, seeds, and stringy fibers of unpeeled, raw fruits and vegetables and gradually resuming consumption of higher fiber foods, once the diarrhea subsides may prove helpful. Some patients may have other underlying intolerances (such as to gluten or dairy) that could also contribute to looser stooling. It may be helpful to keep a food log to pinpoint trigger foods and eating smaller, more frequent portions throughout the day. For more tailored nutritional recommendations, ask your healthcare team about getting connected with a registered dietitian.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: The results of the DINE study indicated that both the Mediterranean Diet and SCD diets can induce remission and improve symptoms in CD patients. How do I know which diet to try? Is there a guide on how to get started with making dietary changes? Finally, will these changes need to be permanent of just when I have a flare up?
A: After six weeks the DINE-CD study showed that 43.5% of patients following a Mediterranean style diet and 46.5% of patients following the Specific Carbohydrate Diet™ achieved symptomatic remission in Crohn’s disease patients with prior mild-to-moderate symptoms on stable doses of medications. Given these similar results, it’s important to note the differences between the Mediterranean diet and Specific Carbohydrate diet. While the Specific Carbohydrate Diet has typically been popular among IBD patients due to prior research (and the book Breaking the Viscous Cycle) as well as its structured approach, public health experts often recommend a Mediterranean style diet because it has a variety of other health benefits. Researchers from the DINE-CD study also note that the Mediterranean diet is easier to follow for most and less restrictive than the Specific Carbohydrate Diet which may make it preferred for patients with CD with mild to moderate symptoms. However, there is no universal guide that will work for everyone with IBD as individual tolerance to items such as fruits, vegetables, and other fiber sources may vary and specifics like surgical/medical history, access to food, and nutritional/functional status should be accounted for. While there is no specific instruction set on how to get started, working with a trained professional such as a registered dietitian can help you put these specific dietary changes into place as well as make tailored nutritional recommendations. As of now, the DINE-CD study recommends these diets as a long-term approach to manage symptoms of IBD.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2021
Q: Is poor circulation a side effect of ulcerative colitis? My legs and fingers numb or in pain most of the time and now my left leg has lost some mobility. I don't see much online about it. Thank you so much for any information you can provide!
A: We can see patients that also have a diagnosis of Raynaud’s which can cause issues with circulation especially in fingers and toes. I would be more concerned about the lack of mobility in your left leg which could be a sign of something more serious like a stroke. I would recommend that you review with your primary care physician and treating ulcerative colitis provider.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
June 2021
Q: I am getting ready to have another colonoscopy. I know that the split prep is typical. However, I am not willing to wake up in the middle of the night. I have two young children and the idea of being up more than I need to in the middle of the night is enough to make me cancel my colonoscopy (since I have no way to catch up on rest). I know that there are alternate schedules since I have done them in the past. What are some prep schedules that would not require me to be up at night?
A: Studies have shown that the split prep is more effective and providers a cleaner colon. The challenge is that almost any prep will have you waking up at night due to starting at 5pm and the colon getting moving early evening and likely throughout the evening. I think if you have concerns about your prep and timing, work with your ordering provider to see if you can arrange alternative schedule. Ie last colonoscopy of the day and doing alternative prep that still work meet requirements for NPO status.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
June 2021
Q: To get a UC flare under control, my doctor prescribed me prednisone, in a stronger and longer dosage than I've taken before. I was on 40 mg for 3 weeks, and through the tapering process am now at 30 mg. Two weeks ago at the 35 dose level, I started feeling funky -- very foggy and lightheaded, like I could not focus on anything. I still am experiencing this, with a bit of head pressure. Is this normal and due to the steroids? Is there anything I can do to mitigate these side effects?
A: Prednisone/steroids can make some people feel different/off. However if you are having any specific localizing symptoms like a headache or pressure I would recommend evaluation with a medical provider to do an examination and exclude other causes to your symptoms. It is challenging as there is really no way to mitigate the effects of steroids other than decreasing the dose or not taking them. Another consideration could be using a more gut selective steroid like budesonide-MMX (Uceris) or budesonide (Entocort)
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
June 2021
Q: Hi, I'm 13 years old and was diagnosed recently with Ulcerative Colitis. When I flare, my hands get super dry, scaly, bloody, and painful. It only happens when my stomach is bad. Is this related to the illness?
A: It is challenging to answer this based on what you are describing as rashes are best visualized. However that being said skin manifestations of inflammatory bowel disease are common. When this happens I would recommend you send photo to your GI provider who might consider a dermatology referral for further evaluation.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
June 2021
Q: I have had Crohn’s disease since 1993 and a few years ago after my second bowel resection, my GI doctor started me on Entyvio infusions and I have achieved remission which I am so grateful. My issue is with my frequent and urgent diarrhea/watery bowels and my work place. Imodium, diet changes and specialized medication have been used without success. The most successful treatment was a two week antibiotic Rx but nothing since then. I am miserable at work and in need of advice.
A: Congrats on achieving remission! I assume when you say remission they have either done stool testing, imaging with CT or MRI or a colonoscopy/endoscopy. If that is the case and you do not have any active inflammation then I suspect that your diarrhea might be due to a condition called bile acid malabsorption. Bile acids (made in the liver and stored in the gallbladder) are released when you eat and are typically reabsorbed in the terminal ileum (where I suspect you have had surgery several times). If you are missing your terminal ileum or a portion of it you get bile acid malabsorption which leads to diarrhea, bloating and cramping. We have medications called bile acid binders that can improve these symptoms dramatically, you should discuss this with your primary GI provider. Another possible cause of diarrhea that can respond to antibiotics would be small intestinal bacterial overgrowth and that typically responds well to antibiotics.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
May 2021
Q: I had my second COVID 19 vaccine 2 days ago. I have been very frightened of contracting COVID since losing a 31-y-old cousin to the disease and have not been getting together with family/friends. At my vaccine appointment, I was told that it may take me longer to get full efficacy of the vaccine than other people because I have Crohn’s and take Stelara, which suppresses my immune system. I wasn’t told how much longer to wait to get together with others. How much longer should I wait?
A: There have been initial studies concerned for the possibility of lower antibodies titers after the first vaccine dose in patients who are immunocompromised, but we do not know if this applies specifically to patients with IBD on biologics, and whether that is the case after the second dose. A recent small study, however, found that IBD patients on medical therapy mount the same response as patients without IBD after the Covid Vaccine. So at this point we do not have evidence that patients with IBD on Stelara or other biologic drugs will have a delay in immunity or difference in immunity. Our evidence suggests that after your second dose of vaccine, you can function as if you were a patient who has been vaccinated in the general population. No need to wait any longer than any other vaccinated people.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
May 2021
Q: I am a 52-year-old male who has been suffering from IBD for more than two years. I have been taking mesalamine since then and also have been taking steroid (prednisone) almost fifty percent of the time to control flareup. Recently I came across some research papers that showed direct link between Vitamin D3 and IBD. My current vitamin D level is borderline at 30 nmol/L. Do you think increasing the level to 75 by taking high dosage of vitamin D3 would help to curb the auto immune disease?
A: While there is some data that Vitamin D3 may be associated with IBD, there is not yet strong data that increasing your vitamin D to high level you have mentioned will be beneficial.
The goal of IBD treatment is to be in a stable, steroid free remission. If you are requiring steroids 50% of the time, this is a sign that the medication you are taking is not working, and either the dose may need to be adjusted, or a new medication is needed. Steroids are the medications associated with the most risks and side effects in IBD treatment, and should be avoided as much as possible.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
May 2021
Q: What antibiotics are best for IBD patients for conditions like sinus infections. Are there particular antibiotics that should be avoided by IBD patients? Should probiotics be taken when you are on an antibiotic?
A: Antibiotics can cause diarrhea by disrupting the normal bacterial community in the intestine. One of the most common ways that antibiotics can cause diarrhea is through increasing susceptibility to C difficile infection. The classes of antibiotics that have the highest association with C diff infection risk are fluroquinolones, Clindamycin, Penicillins, Cephalosporins, and Carbapenems.
There is low quality evidence for probiotics. There may be some benefit to taking probiotics such as Saccharyces boulardii, the combination of L acidophilus and L casei, the combination of L acidophilus, L delbrueckii bulgaricus, and B bifidum, or the combination of L acidophilus, L delbrueckii bulgaricus, B bifidum, and S salivarius thermophilus.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
May 2021
Q: I'm 30 and I was diagnosed with Crohn's disease last year. I've been suffering new symptoms between infusions. Is it normal for the arthritis associated with Crohn's to be so excruciating? I have trouble gripping a doorknob at times. Also, is nerve hypersensitivity also associated with Crohn's? I just need to know what issues to take to my gastroenterologist and what to discuss with other providers.
A: Unfortunately, arthritis is associated with Crohn’s disease and ulcerative colitis, and can be quite painful. New arthritis symptoms should definitely be discussed with your provider so that she or he can determine whether the symptoms are due to ongoing bowel inflammation, medication side effects, or potentially simply share the same underlying genetic risk as IBD. Some IBD medications are better than others at treating arthritis, and medication adjustments may be needed, or medications may need to be added in order to get the arthritis under control.
New nerve symptoms should also be discussed with your IBD provider. Nerve symptoms may be related to vitamin deficiencies that can occur with IBD, or possible medication side effects. It is also best to bring up any new symptoms so that your provider can you let you know if he or she thinks that they may be related to your underlying condition or treatment or not.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
May 2021
Q: I am 36 and was recently diagnosed with UC. I take medication for chronic pain syndrome, will this affect my UC ? If so, should I discuss with my gastroenterologist when I get my new medication for UC? And how should I go about this discussion?
A: Discussing any medications that you are taking, whether prescribed, over the counter, or supplements is important in order to make sure there are no interactions with your other medications and that the medications that you are on do not affect your IBD symptoms.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
April 2021
Q: I am 21 years old and have been diagnosed with Crohn’s this last month. I am really leaning more towards not taking any medication. Instead taking vitamins and supplements along with cannabis. I have found that helps the most. Is it necessary to take prescription medication, if I have found a way to be in remission?
A: Many patients are anxious about taking medications in the setting of a new diagnosis. A small select group of patients with very mild Crohn’s disease do not need chronic medication, but the of patients majority do. In addition, if Crohn’s is not controlled many patients on no medications known to be effective will go on to eventually have significant complications from their disease and a lower quality of life long term. Unfortunately vitamins, supplements do not have evidence of treating Crohn’s and there still not enough data to determine the impact of Cannabis positive or negative. You may be effectively treating your symptoms but the concern is that your underlying disease will progress if it is not addressed with medications or possibly well timed surgery. The idea is to intervene on your disease, prior to the disease progressing. Please discuss with your gastroenterologist if there are other medical therapies and treatment
strategies that could benefit you. In the meantime, good quality sleep, a balanced diet low in processed food, addressing anxiety and depression if present, and even adjunctive measures such as mindful meditation as adjuncts to improve your quality of care can be considered as you and your physician make decisions on treatment.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I have been on Remicade/Inflectra for 19 years. I receive infusions every 8 weeks along with blood draws as necessary. Because of so many years of this (and maybe because of my age - 64), my veins can be difficult to access. I only have 2 that the clinic seems to be able to use. I am considering a port. My GI is okay with it but I am still on the fence. What are the pros and cons of a port?
A: Pros of a port would be easy access for your infusion nurses, less pain as well less anxiety for you every time you have to think of getting a medication that has kept you well for 19 years. You would also be able to get your labs drawn through the port. Some patients also like having both arms free during treatment. It also would help preserve the veins you do have. Cons would include the risk of infection, which could be severe. This is my greatest concern for patients. Ports also do need upkeep and patients who are vigilant about monitoring for infection or complications: they can malfunction and are susceptible to blood clots and may require replacement. Some patients still get soreness around the site after treatments, not all nurses can access ports, and the port is visible and juts out of the skin, and can be bumped
when patients are particularly active. This is a personal decision to be made with joint decision making with your physician. In the meantime, make sure you are particularly well hydrated before you arrive for your infusions, not just the morning of but the whole day before. Identify nurses who have been successful in accessing your veins in the past.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I was diagnosed with a mild case of Crohns 6 months ago. My doctor tells me that biologics are the only treatment to achieve long-term remission. I'm very concerned about having Stelara in my body for the rest of my life. I'm told that this is the treatment for me. Are there are any other non-biologic drugs that could help me achieve remission, or if dietary changes can achieve the same effect.
A: The details of your case are best known by your primary gastroenterologist. There are various types of medications for Crohn’s. Biologics, for patients who have mild to moderate disease and depending on their risk for progression, in terms of getting patients into remission and keeping them there have the strongest data and best safety records compared to other available non-biologic medications. What I tell all my patients is that you will be on Stelara “Forever For Today” – what I mean by that is that if the medication works we would keep you on it for as long as it works. If the medication does not work or stops working, we do not keep you on it forever. If a new treatment arrives which would be better suited to you, you would be switch you. In short, from the information we have at this time we would hope and wish that we can keep you on this medication that is very effective with a great safety record. The concern about having a medication for a lifetime is understandable. However, at this time there is no cure for Crohn’s and we know that the majority of patients need to be on lifelong medication. There is a dysregulation in your immune system pertaining to your gut, and unfortunately we need to use medications to help regulate that for you. While some dietary interventions have helped patients (less process food diets, Mediterranean type diets), we do not yet have evidence that diet alone can control infection in the long term.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I have been on Entyvio for a year now and have experienced total remission from my ulcerative colitis symptoms. However, since starting the medication I have had nonstop bloating. I have tried countless treatments, including medication, low fodmap diet, meditation, ibguard, antibiotics, etc. Nothing has stopped the bloating. Considering that the bloating started around the time I started my infusions, could this be a side effect of the Entyvio?
A: Bloating is not a recognized side effect of Entyvio, though every patient is different and every patient’s response to a medication may be unique. It sounds as if you have explored several causes of bloating other than the medication and not found relief. There may be many causes of bloating, including IBS to which patients with IBD are at risk. Celiac disease, lactose
intolerance, small bowel bacterial overgrowth and medications are all possible causes. Is it possible that you changed your dietary habits since feeling better from ulcerative colitis standpoint? Has your small bowel been evaluated? Hormonal changes can also impact bloating. If not causes are found, biofeedback can be considered and has been shown to decrease distension.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I am currently on a biologic (infliximab)regimen for UC. I have the second COVID vaccine
shot coming up soon. Two days after the vaccine, I am scheduled for my biologic
infusion. Is this safe? Will the vaccine so closely administered adversely affect the
effectiveness of either? Should I postpone my infusion?
A: These are all good questions. There are no consensus recommendations on spacing our
the COVID vaccine with infusions. I advise my patients to leave at least 3 days between
the vaccine and an infusion to better decipher if one or the other is causing new
symptoms. Three days is generally enough time for any symptoms from the vaccine to
resolve.
There is nothing to indicate that postponing the infliximab infusion will be helpful for
the vaccine. In fact, it may put you at risk for a flare of your UC. We do not yet know if
medications like infliximab blunt the effects of the vaccine but this is an active area of
study. I advise my patients to get the vaccine and continue their therapies as scheduled
until more information is available
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I was diagnosed with Crohn’s disease 10 years ago. I’m on my 3rd biologic medication
(ustekinumab). I had a small bowel resection in 2016. I am having trouble keeping my
vitamin levels up where they should be. I feel like this is a huge factor in my hair loss. I’m
on a daily multi-vitamin, Vit D supplement daily and B12 shot monthly. I’m looking for
ways to get extra vitamins into my diet. Can dietary supplement drinks help to boost my
vitamin levels?
A: Thanks for the question. Before adding additional supplements to your regimen, it may
not be a bad idea to stay on high dose Vitamin D and B12 shots for 3-6 months and then
rechecking these vitamin levels again. If you have already done this and your levels are
still low, you may need to be on higher doses of Vitamin D and other causes of B12
deficiency should be evaluated.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have recently been diagnosed with small bowel Cohn's. A second colonoscopy (after CT) revealed chronic active ileitis. There is inflammation also narrowing of the small intestine at that area. The Dr recommends Humira but after reading results of others, I am afraid of it. I am considering Entyvio over Humira because I read that it has a higher safety profile. How do I decide on medication?
A: The decision on the “right medication” is a very common scenario. The best therapy for a specific person with Crohn’s disease is going to be based on several different factors. Therefore, it may be different for you versus someone else with Crohn’s disease. I would discuss the risks and benefits of each of the therapies being considered with your gastroenterologist and together, determine the best option for you.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I am a 60-year-old woman diagnosed with UC 5 months ago. I initially reacted very well to oral mesalamine; all my symptoms stopped. Now I'm having a flare. Stool tests showed inflammation but no infection. Now my doc wants me to get another colonoscopy. He didn't give me a very good answer as to why -- and I don't want to get one if I don't have to (prep very hard for me, vomiting, etc.). Do I really need a 2nd colonoscopy within 6 months or are there other test that provide needed information?
A: There are multiple appropriate reasons to do a colonoscopy in a patient with UC. One of those scenarios is to evaluate symptoms, particularly if they have changed from before. For you, it sounds like you may have had mild symptoms that went into remission on mesalamine initially but now are having symptoms despite the use of mesalamine. It is not unreasonable to repeat a colonoscopy at this point. Having said that, it sounds like you had difficulty prepping for the previous colonoscopy. There are other noninvasive markers like stool calprotectin and stool lactoferrin that can also measure inflammation in the colon with a stool test. Additionally, if your disease involves the left side of the colon, a sigmoidoscopy, which does not require a traditional prep, may be a viable
option. I would encourage you to discuss these options along with a colonoscopy with your gastroenterologist to determine the best decision for you.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have been on vedolizumab for almost 4 years. I have had ongoing burning mouth
problems for over a year with recently has accompanied 4 months of thrush with a
peeling palate. Could this be a reaction to vedolizumab or to Crohn’s?
A: Thrush is not something we typically see with vedolizumab or Crohn’s disease. I would
discuss other causes for the thrush with your PCP.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have been on vedolizumab for a year now and have experienced total remission from
my ulcerative colitis symptoms. However, since starting the medication I have had
nonstop bloating. I have tried countless treatments, including medication, low fodmap
diet, meditation, ibguard, antibiotics, etc. Nothing has stopped the bloating. Considering
that the bloating started around the time I started my infusions, could this be a side
effect of the medication?
A: Bloating can be a frustrating symptom. It sounds like you have gone through quite a few
different treatments for it as well. Bloating is not something we typically see with
vedolizumab. It may be time to sit down with your gastroenterologist and examine
other causes for your bloating.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2021
Q: I am 19 and have ulcerative Colitis. I tend to use toilet 2-3 times a day and don't have diarrhea. I do get blood in my stool though, not a lot but some streaks of blood on the solid stool. I also experience slight pain whenever my abdomen is bloated. I've been prescribed Mesacol suppositories for 4 weeks and I take Mesacol 3.6 grams every day. How can I tell if I am in remission or a flare-up?
A: I think the simplest way is to have your doctor check your fecal calprotectin. It’s a breakdown product of white blood cells and it SHOULD NOT be found in stool. If it’s present in your stool over a threshold value, odds are you are flaring.
If you want to figure it out on your own, it’s harder. Is your weight stable? If it’s dropping with no dieting, maybe you’re flaring. Is your energy level good? If you are napping during the day or going to bed at 9pm, maybe you’re flaring. Occasional blood in the stool is not normal, but might be your baseline if you have mild UC affecting the rectum (proctitis). If that is the case, you are on the correct medication regimen. It is possible that the disease is more extensive and the calprotectin would be good place to start seeing if that is the case.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I get Remicade infusions every 8 weeks for Crohn's. I will soon be eligible to get a COVID 19 vaccination. I need to know whether it is necessary to time the shot around my Remicade. I previously thought vaccinations had to be at least 2 weeks before or after Remicade, but I recently read that this is not necessary. I am anxious to get the vaccine and am hoping for as little delay as possible.
A: I have been telling my patients to take the COVID vaccine whenever they can get it, irrespective of where they are in the infusion cycle. This is because there is no data on taking the vaccine on immunosuppression and the vaccine availability is limited.
My theory on this is that there is at all times a minimum of Remicade in your body, which slightly decreases your body’s ability to develop antibodies to COVID. However, there is no data that more Remicade inhibits the antibody rate more.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I was diagnosed with Crohn’s 30 years ago and had a bowel resection. I have not been on medication for 27 years. I just watch what I eat. I’m feeling good except I get bowel obstructions a few times a year which is due to a stricture at the resection site. I am interested in trying an endoscopic balloon dilation, but my GI doctor will not give me any options except taking a biologic. Where can I get info on this and see if I would be a candidate?
A: I think you are right, this stricture is unlikely to respond to biologics. It’s most likely fibrotic. You can check by seeing if you have any elevated inflammatory markers (CRP, ESR, calprotectin). If they are all normal, which based on what you are describing they are likely to be, the biologics don’t have a role. Regarding dilation, the dogma is that if the stricture is less than 5 cm, it’s amenable to balloon dilation. If it’s greater, you might need surgery. The IBD Help Center might be able to direct you to GI doctors who are versed in the literature and have dilation capabilities in their office.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I was diagnosed with mild to moderate Ulcerative Colitis a year and 6 months ago. I have been taking 1200 mg of mesalamine with good results but lately I had been having more frequent bowl movements and with what felt like stomach spasms. I went to my GI who ordered bloodwork along with stool and urine tests and the results were all normal. He prescribed digestive enzymes to take with along with the other med and the stomach spasms have stopped. Are these in common use with UC?
A: Nope, digestive enzymes (I assume you mean pancreatic enzymes?) are not common. You are likely underdosed on the mesalamine, the maintenance dose is more than 2,000 mg mesalamine a day and the flare dose is more than 4,000 mg a day.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: Six months ago I had Covid-19 and now have the antibodies. My UC is in remission and I take mesalamine for it. I was previously on 6mp until I contracted Covid and then stopped. Is it now safe for me to get the COVID vaccine or should I wait until more information is available about the effects on individuals with auto-immune disease or until I no longer have antibodies?
A: It is safe to get the vaccine. I am telling even people on dual immunosuppression to take it. You are basically on no immune medication, so you are like the general population that the vaccine trials were done on, except for your IBD which is in remission. We don’t know how long the infection antibodies will last, so doctors in the hospital who had COVID are still taking the vaccine, because we believe it’ll protect them from a bad infection.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I had a colectomy in 2015 and have j pouch. I’ve been battling chronic pouchitis for about three years as have done multiple treatments of Cipro & Metronidazole but have major side effects. I also tried probiotics. Are there any new treatments for pouchitis?
A: Pouchitis is a bear. I don’t have to tell you. Sometimes, all you can do is redo the pouch. There are national leaders in redo pouch surgery. Contact the IBD Help Center for info on health care providers (info@crohnscolitisfoundation.org).
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2021
Q: I am 21 year old gay man. I’ve had ulcerative colitis for about a year now. It has been very hard on my mental health, particularly the sex aspect of my life. It feels like I’ll never be able to do the “back door” part of being intimate with someone. Will I ever be able to?
A: With full mucosal healing in the rectum and no urgency, bleeding or perianal fistulas or fissures, sexual activity is possible. I recommend discussing your sexual health as a goal of your treatment with your gastroenterologist and continuing to adjust your treatment to achieve healing of your colon. Also, getting appropriate psychological counseling is a great addition to your care.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I was diagnosed with Microscopic Lymphocytic Colitis in April 2018. It is like Budesonide works well if I stay on it. My GI doctor's keep moving me on and off different treatments and none of them seem to work. Is MLC an IBD? Is MLC an autoimmune disease? Is there a standard treatment for MLC and where can I get more information on this condition?
A: Budesonide is a very effective treatment for microscopic colitis. Microscopic colitis has 2 subtypes, collagenous and lymphocytic colitis. Yes, this is a type of inflammatory bowel disease but generally has a good prognosis in that it does not increase colon cancer risk like ulcerative colitis can. The cause of microscopic colitis is unknown, but the immune system is definitely involved ast is is an inflammatory condition. Some microscopic colitis can be triggered by certain medications (like NSAIDS, acid suppressants, antidepressants), so I recommend a thorough review of your medication list with your GI physician. Budesonide is the most effective treatment for microscopic colitis, even though it can also be treated with cholestyramine and bismuth. If there is no response to budesonide, other conditions/problems should be considered and a work-up for other causes such as food intolerances and celiac disease initiated. For certain refractory cases of microscopic colitis, the use of medications normally used for Crohn’s and ulcerative colitis like biologic therapies and immunomodulators may be needed. Some resources for reading: https://gastro.org/guidelines/liver-diseases/the-medical-management-of-microscopic-colitis/
https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/diagnosis-treatment/drc-20351483
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I am a 57-year-old female diagnosed with Crohn's November 2014. I take Humira weekly injections. I suffer from anal bleeding and horrific burning in my belly, four out of five days a week. Can these symptoms be side effects of the disease, the medication or something else? Is there something that can be done to eliminate these side effects?
A: Rectal bleeding and burning in the abdomen are not side effects of the medication humira itself, however, they could be a flare of Crohn’s disease itself or a complication of Crohn’s (such as a stricture, partial bowel obstruction, abscess). The symptoms need to be evaluated with endoscopy/colonoscopy or imaging studies. They could mean that the humira is not working well for your Crohn’s or that your medication or treatment needs to be adjusted.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I’m currently on stelara every 8 weeks which is working well for me, however I am also 19 weeks pregnant. My next injection will be when I’m 22 weeks which is fine, but the following will be when I’m 30 weeks and in the third trimester, is it still safe to take this injection at 30 weeks and then stop treatment? I may be induced at 39 weeks so would one at 38 weeks would be out of the question?
A: Keeping the inflammatory bowel disease under control is the most important goal in pregnancy. It is safe to take the injection at 30 weeks, but waiting one week to take the 38-week dose seems reasonable given that it’s possibly very close to your delivery induction date. I would recommend taking that dose immediately after delivery. That said, if your IBD is active, or you tend to flare easily, the dose does not have to be held or changed. As always, involving your GI and OB physicians is key as they are familiar with the details /severity of your IBD.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I have recently been diagnosed with Crohn's and have started Humira. I know that it will take several weeks to see any changes. In the meantime, I have had a flare-up with symptoms lasting more than 7 days. I don't have a lot of diarrhea; however, I do get a lot of burning and 'gurgling' (sounds like a coffee pot percolating) in my stomach. I take Pepcid, which makes the burning feel better. Is it okay to take an antacid with Humira? What is the gurgling?
A: Yes, it is okay to take antacids with humira. Gurgling is a very nonspecific symptom of feeling food or gas go through your GI tract It can be associated with inflammation, narrowing of the intestine, food intolerances like lactose intolerance, bacterial overgrowth or gut sensitivity
Please contact your gastroenterology physician becasue as a new humira patient, you may need to take a short course of a steroid (like prednisone or budesonide) if the symptoms are bothersome while the humira takes effect.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I am a 39-year old male and was diagnosed 6 years ago with left sided ulcerative colitis. The affected area remains at the last 25 cm of the colon. I take mesalamine and rowasa enemas. I find myself with mild flares every 6 - 12 months. I use Uceris to control the flares. While the flares are mild, I cannot retain long remissions. Can I do anything else to help with
treatment? Moving up to the Immune Modifiers and Biologics seem to be an overkill and not sure if it is worth the risks.
A: I recommend discussing moving to a biologic therapy, perhaps considering vedolizumab which has a safer side effect/lower risk profile to prevent flares. I also recommend asking your gastroenterologist if your colon is healed on just mesalamine by mouth and the enemas. If there is still active inflammation on colonoscopy between flares it is prudent to add a biologic to achieve the goal of mucosal healing. Achieving healing of the colon can prevent further flares and minimize the risk of development of precancerous changes in the future.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
December 2020
Q: Is the Specific Carbohydrate Diet one that is helpful in controlling ulcerative colitis symptoms?
A: A Specific Carbohydrate Diet(SCD) is a grain-free diet that is low in sugar and lactose. It is considered an exclusion diet in which foods are eliminated from a patient's diet. It takes discipline to maintain; it requires more meal-planning and preparation. Studies with adults and pediatric patients with IBD have shown that a SCD is often more useful to manage symptoms for Crohn's than UC.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: My partner has had Crohn's for 10 years. Two years ago, he had surgery (resection). He loves food and has been focused on regaining weight lost. Now, he has put on weight and has been sedentary because of COVID-19. I worry about his diet which includes fried foods, rich sauces, take-aways, fizzy drinks, lots of snacks (crisps, sweets); odd eating times. I think he would benefit from professional help, although he is resistant. What can I do?
A: A registered dietitian is a helpful member of a patient's health care team. Consider a nutrition consult if he is interested in improving his diet. www.eatright.org is a useful way to find a dietitian in your area if your health care team does not have a dietitian. If he is interested in making a few changes, consider ordering healthier foods from restaurants for take-out or curbside. Add more fruits and vegetables. Many people have struggled with erratic mealtimes since mid-March due to pandemic.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I have ulcerative colitis that is in remission most of the time. Is coffee bad for IBD patients or just the caffeine component? Would decaf coffee be ok when I am in remission?
A: Caffeine is often considered an ingredient to avoid during a flare. Caffeine can have a laxative effect for some patients. A study looking a patients' perception of the effect of caffeine on symptoms (Barthal, 2015) showed that patients felt caffeine made GI symptoms worse. However, many adults continued to drink coffee. Decaffeinated coffee may be the safer choice.
It is important to remember that caffeine is not associated with inflammation.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I am looking for a protein powder supplement. I do not eat meat, though I will eat eggs. When in a flare-up, I limit my bean intake. I also avoid gluten as much as possible. Is there a certain type of protein that could be suggested for UC patients (pea, cranberry, whey, etc.)?
A: It is important to determine the amount of protein recommended. Talk to your health care team and set a goal.
There are some many protein powders and drinks on the market. First, look at the protein source. Try a small amount of a dairy-based or plant-based protein powder to determine if you tolerate. Plant-based protein powder can be made from grains, nuts, soy, or seeds. Some protein powders are blends of a variety of plants.
When comparing protein powders and drinks, look at the sugar content. Many supplements are high in sugar.
When comparing protein powders and drinks, be aware a 2018 study showed some powders and drinks contain heavy metals like arsenic, cadmium and lead. Do your research before purchasing.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I am having my first flare up of Collagenous Colitis since first being diagnosed 1 year ago. My GI doctor said to stay on a bland diet and Bismuth therapy for 8 weeks. What exactly is a bland diet? I just added Gluten free Bread to my diet. Are there other foods I need to add to my diet?
A: A bland diet is a meal plan that includes foods that are easy to digest. Choose foods that are low in fat, low in fiber, and easy to chew. A bland diet often consists of foods that are mild in flavor. Spicy foods should be avoided. A bland diet is generally a diet to exclude, not a diet to add foods.
It might be useful to keep a food diary to identify any possible food triggers.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
November 2020
Q: My son is 7 and just diagnosed with Crohn's. His disease is severe. The doctor gave us a choice Humira or Remicade. How do you decide about which medication to choose?
A: This is a very common question. In my practice, we stress the importance of shared decision making between the physician, the parents and the most importantly, the patient. When selecting a new medication, it is key to be completely informed. As both adalimumab (Humira) and infliximab (Remicade) target the same inflammatory protein (TNF-alpha), their efficacy (remission rates) are essentially equal for Crohn’s disease. In addition, the safety profile are similar.
How are they different. Adalumumab is given as an injection (typically in the lower abdomen or upper thigh) at home and infliximab is given as an infusion requiring an intravenous (IV) catheter with each dose. Adalimumab is injected every 2 weeks (although some patients require weekly dosing). The first 3 doses of infliximab (induction) are given over 6 weeks with maintenance doses given every 8 weeks (some patients may require infusions every 4-6 weeks). Infliximab infusions require outpatient visits at infusion centers with the infusion lasting 1-3 hours. Factors to consider between the two: convenience (home vs. infusion center) and patient preference to medication delivery (injections vs. IV starts). At our center, all patients starting infliximab receive the first 5 doses over 3-hours at our infusion center. If the infusions are well-tolerated, we provide the option of receiving those infusions over 1-hour and at the patients home with a nurse from the home health agency.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: I am 15 and my dad has Crohn’s. Recently I’ve started showing symptoms and I know I need to tell my parents so I can see a doctor and find out if that’s what it is, but I don’t know how to tell my parents. I am terrified and I do not know what to do.
A: Whenever a parent is ill, it is natural for a child to be concerned about their own health. Although we know a family history of Crohn’s may increase the risk of Crohn’s disease in their children, it is also important to know that many of the signs and symptoms that are associated with Crohn’s disease are also shared with other illnesses, such as gastrointestinal infections (bacterial or viral causes), irritable bowel syndrome (IBS) or Celiac disease. In my practice, it is common to see siblings or children with a family history of Crohn’s disease and find out (by examination or testing) that the primary symptoms are secondary to another cause and not Crohn’s disease.
In your situation, it is important to discuss these symptoms with your parents so they can make an appointment with your regular doctor. Your doctor will carefully listen to your symptoms, check your growth (height and weight), perform a physical exam and potentially order blood or stool tests to determine the cause. The sooner a diagnosis is made, the faster a treatment can be offered. If any of the symptoms are concerning for Crohn’s disease, your doctor will make an appointment with a gastroenterologist, a doctor specialized in diagnosing and treating Crohn’s disease. It’s really important to know that in the present day (2020), there are many more medication and dietary options to better manage Crohn’s disease than were available to previous generations. I tell each patient newly diagnosed with Crohn’s disease, that regardless of the ups/downs or curves in their road to recovery, our goal is to find the best treatment that puts them back on a straight path toward achieving all their personal goals!
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: I was recently diagnosed with UC as a 30-year-old female. I had always assumed I would have children, but now I am worried about the risk children might face. What is the absolute risk that my children would develop IBD or another autoimmune disease? Of 100 children born to women who have UC, how many go on to develop an autoimmune disease?
A: While the cause of the inflammatory bowel diseases (IBD, ulcerative colitis and Crohn’s disease) is multifactorial, the current data suggests the absolute risk for UC is 1.6% with maternal UC and 2.7% with maternal Crohn’s disease. If both parents have IBD, then the overall risk is increased. It is important to discuss family planning with your gastroenterologist as there are some medications that may need to be stopped or changed prior to becoming pregnant.
While there is so much more to learn about the risks of developing IBD, we do know the three main components are (1) genetic, (2) environment exposures and intestinal microbiome and (3) an inappropriate immune response. For IBD to develop, it’s a combination of the perfect storm of all three components. It’s natural for parents/patients to ask what they can do to prevent IBD in their own children? The latest data would suggest that environmental triggers that increase the risk of IBD are (a) exposure (active or passive) to cigarette smoking (b) increased use of antibiotics, (c) increased use of nonsteroidal anti-inflammatory drugs (NSAIDS like ibuprofen) and (d) consuming a westernized, highly processed diet.
The current data also suggests that the key to optimal the best outcomes (child or adult) is recognizing (awareness) the symptoms of IBD, early diagnosis and timely treatment.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: My 18-year-old son was recently diagnosed with ulcerative colitis. He is 5’11” and is down to only 126 pounds. His body is not absorbing nutrients. They are going to put him on Humira and steroids. I have read the side effects of Humira and it scares me. What are his risks of taking Humira at his young age? He is also very depressed. What can I do to help him?
A: Although the diagnosis of ulcerative colitis or Crohn’s disease can be difficult for any patient at any age, it is important to recognize that depression and anxiety are extremely common when the diagnosis occurs during adolescence and young adulthood. At our center, we offer every child/young adult the opportunity to meet with our IBD-focused psychologist. We find that young patients really need an outlet to express their feelings as our behavioral specialists focus on teaching techniques to cope with the disease. Whether it’s use of guided imagery or deep breathing, coping is a learned behavior that young patients may not initially intuitively recognize or take the time to practice. It’s important to recognize when to ask for help with a psychologist or psychiatrist, even if your treatment center doesn’t have access to an IBD-focused psychologist.
Adalimumab (Humira) is a medication that binds to a protein in the body called TNF-alpha. The multiple studies in adults and children have shown that it not only heals the intestinal tract, but also improves growth by improving gut absorption of key nutrients and improving the overall quality of life for the patient. It is classified as an immune-suppressing medication. While the use of this medication can be associated with an increase risk of certain infections, this is uncommon. Prior to starting, your doctor will check for an active TB infection and may check for active intestinal infections or fungal infections. The additional risks such as an allergic reactions to the injection, rashes, liver injury, and certain cancers are also very low. It’s important to discuss the specific risk/benefits with your doctor so they can tailor the treatment to your needs.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: My 17-year-old son has now chipped and broke 3 bone areas. He is on Remicade and these areas have not healed after surgery. Does Crohns affect bone health and healing or is it the meds?
A: Crohn’s disease can certainly impair bone health as all patients are at an increased risk of nutrient deficiencies (Vitamin D, Vitamin B12, zinc, iron and folate). Moreover, some Crohn’s disease patients may restrict their diets (such as dairy-free, lactose-free) to control symptoms, and therefore, can further exacerbate the risk of poor bone health by limiting both Vitamin D and calcium.
For your 17 year-old son, it would be important to keep a 1-2 week diet history to further review with your gastroenterologist or registered dietician to better understand if his current diet is lacking specific nutrients. Given the history of poor bone health, he may require additional Vitamin D and calcium depending on this diet history. In my practice, we check Vitamin D every 6 months (supplement when needed) and check a bone density at the time of diagnosis and repeat if needed (such as following recurrent fractures or more severe disease). While clinical remission (no active gastrointestinal symptoms) is an important goal, we now recognize that complete gut healing is even more important in order to prevent further complications of Crohn’s disease. It is reasonable to review your laboratory markers with your doctor and ask if further testing is needed (endoscopy or abdominal imaging). In regards to the medication, we typically find that the infliximab (Remicade) improves intestinal absorption of key nutrients by healing the gut. As each patient requires personalized care for their IBD, I would recommend discussing potential medical side effects with your primary gastroenterologist as well.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
October 2020
Q: I have Crohns and had a permanent ileostomy 10 years ago. I have been having great health with minimal issues. But lately I feel like I have flares, fatigue, stomach aches, eye inflammatory issues, more frequently. Since I have an ostomy it is not the usual bloody diarrhea flares. I am not taking any medication since my surgery. Should I be taking medication?
A: If you are not feeling well and have fatigue and stomach aches, it is important to contact your health care provider and make sure the symptoms are evaluated. Your doctor will determine whether you need blood work, imaging like a CT scan or MRI, or scopes like an upper endoscopy to look into the esophagus, stomach, and first part of the small intestine (duodenum) or ileoscopy (scope through the ileostomy) to check whether there is any inflammation that may need Crohn’s medication or to find any other cause for symptoms. Even if Crohn’s is not the cause of your symptoms, it is important to get them evaluated and find a way to manage them so that you can have the best possible quality of life.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2020
Q: Is it normal to have problems with sex while in a flare? I am a young woman with UC and I would like to know if there is anything that can be done about pain during sex?
A: Unfortunately, sexual dysfunction, which can include pain, is common patients with UC and CD. Please bring this up with your UC health care provider, so that they can provide you with a referral to a sexual health specialist. Sometimes given the difficulties with urgency and frequency that come with a UC flare, patients can develop pelvic floor dysfunction, in which the muscles of the pelvic floor have difficulty relaxing, which may contribute to pain. Pelvic floor physical therapy can be done, if this is found to be the cause of the pain.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2020
Q: My partner has been diagnosed with Crohn’s Ileitis and she has been having terrible flare ups - always at night - her stomach swells to the size of a big balloon and is rock hard. The pain is unbearable for her. It is very difficult to watch and I feel so helpless. I have two questions: 1) Is this a normal effect of Crohn’s 2) What can I give her to ease the pain?
A: Unbearable pain should never be a normal part of Crohn’s disease. The goal for our Crohn’s patients is to be well, and in a stable remission. If your partner is in pain, she should undergo testing with her health care provider to find out why the bloating and pain is occurring, and what can be done to treat the underlying problem. Your partner’s health care provider can provide suggestions for pain control if needed as well. In the meantime, Ibuprofen and other NSAID pain relievers should be avoided in IBD patients, because frequent use can worsen GI tract inflammation. Acetaminophen, in doses as directed on the label, is an over the counter pain reliever that can be used safely for IBD patients.
5. I was just diagnosed with mild Crohn’s in my small intestines. I do not have the usual sympto
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2020
Q: I was just diagnosed with mild Crohn’s in my small intestines. I do not have the usual symptom of diarrhea but had eye inflammation a few times this year. My doctor wants to start Humira and Imuran. I am very worried about the side effects especially since these suppress the immune system. I am worried about getting cancer and other infections. Are these medications usually safe and well tolerated? Is it best to start this level of treatment even though I have mild CD?
A: Crohn’s disease in the small intestine often does not cause diarrhea, since it is the job of the colon to absorb water and create formed bowel movements. If your Crohn’s is limited to the small intestine, it makes sense that your colon is still doing its normal job of making regular, formed bowel movements. Sometimes the symptoms of small bowel Crohn’s, like bloating, or abdominal pain, can be harder to notice if they happen slowly over time. Some types of eye inflammation can be linked to bowel inflammation, and Humira is also indicated for the treatment of one type of eye inflammation called uveitis. Yes, the medications are usually safe and well tolerated. In Crohn’s disease, for reasons that we do not completely understand, your immune system is doing something it should not---it is attacking your small intestine. Humira and Imuran are meant to turn down this overactive immune response. Most patients tolerate these medications well, and your health care team will be carefully monitoring you to make sure this is the case. Risks of cancer are very low as well. There are several things you can to do help keep yourself safe and help prevent infections and cancer, which include keeping up to date on vaccinations and cancer screening. The Crohn’s and Colitis Foundation has made a checklist for the best ways to maintain your health, which can be found here:
https://www.crohnscolitisfoundation.org/sites/default/files/2019-09/Health%20Maintenance%20Checklist%202019-3.pdf
When your doctor makes a decision regarding the best treatment for you, the decision includes not only how active your disease is right now (thankfully mild for you), but also the risks of the disease becoming worse or developing complications in the future. Therefore, even though the disease may be mild now, it likely is important to treat it now, so that you can enter remission, and it never becomes anything more than mild.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2020
Q: My UC was diagnosed in 2009. Prior treatments include 6MP, canasa, steriods (oral and enema), Remicade. I have been on Humira 6+ years, which has managed UC and inflammatory arthritis. For the past year, have been developing chronic sores on skin which has been recently diagnosed as chronic HSV2. Dermatologist believes I will be on Valtrex indefinitely. Considering a switch to Entyvio or stopping biologic treatment. Any research specific to HSV2 and biologics?
A: Very few cases of HSV2 associated with anti-TNF biologics have been reported in medical journals. Most cases seem to have been associated with patients on multiple immunosuppressants, such as prednisone and/or 6MP or Imuran along with a medication like Humira or Remicade. Risks and benefits of your medications are important to discuss with your health care provider to come up with the best plan that may work for you. Keep in mind that stopping biologic treatment may lead to a flare of your UC or arthritis, which could lead to steroid use. Steroids are much higher risk than biologics when it comes to infectious risk. Entyvio (vedolizumab) is thought to be an intestine specific medication, and thus far, has not been associated with risk of other infections. However, Entyvio may not control arthritis and may require that a second medication be started to control the arthritis.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
September 2020
Q: I was diagnosed with mild/moderate colitis three years ago. I’ve been on mesalamine enemas (daily) and max doses mesalamine tablets (daily) for over a year since then. I felt great for a long time, but now I have what I would guess is a flare. Could my symptoms be a reaction to the mesalamine? I read somewhere the medication can make symptoms worse and I’m not sure if over time on max dosing daily, my body may have started to react differently to the meds?
A: There are several reasons that patients might have increasing symptoms after feeling well for a period of time. Even when patients feel well they might have subclinical inflammation, and this increases the risk for clinical symptoms/relapse (flare). Most patients who experience an intolerance to mesalamine will experience early in treatment course, so I think I would look at other reasons for active symptoms. Your health care team should assess for infection as possible cause and consider other objective assessments (CRP, fecal calprotectin or possible endoscopy). If you have active symptoms but evaluation is without active disease, consider other causes for symptoms. If you have active inflammation, the location of the inflammation will help your team guide therapy.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
September 2020
Q: I am 19 and was recently diagnosed with ulcerative colitis. I have a diet without allergens, glutenfree, and low fiber. I already tried steroids, I'm taking pentasa (enema and granules) and starting ozone therapy, but I'm still in the active phase, in which I have been almost 4 months. how long is normal to be in the active phase? if ozone therapy does not work for me either, what treatment will it be next?
A: First I think that active symptoms/inflammation x 4 months is too long. If you did not have a response to steroids that raises a concern for more severe disease and that mesalamine therapy (Pentasa) is probably not the optimal choice of therapy (only indicated for mild-moderate inflammation and not indicated in steroid refractory cases). Ozone therapy has been studied in limited number of patients and has minimal data in the use in IBD. The study was done with mild-moderate disease taking sulfasalazine, the study done in 2010 looked at outcomes/improvement by both symptoms and endoscopy at 4 weeks. I would say at most I would give this regimen 4 weeks, however ensure you are under the care of an IBD specialist who has done a thorough assessment for other possible causes for a prolonged flare.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
September 2020
Q: I was diagnosed with lymphocytic colitis this year at 23. My doctor is a bit puzzled as I guess I am young for this form of colitis, and I’m not on any daily medications that have been known to
lead to it. I was just curious if there are any other potential causes I should bring up in my next appointment. I was also interested if, without an exact cause, if this is likely to be something, I will have to consider long-term medication for.
A: We are starting to see lymphocytic colitis (a form of microscopic colitis) in a younger population than previously described. If you are not taking an acid suppressing therapy (PPI) or NSAID which are the more common associated therapies but not required for the diagnosis. In addition we see this more commonly in those patients who smoke cigarettes. Patients with microscopic colitis are more likely to have a diagnosis of celiac disease, it would be important to have assessment for this as well. Some patients do require long-term medication, it depends on how you respond to initial course of treatment. My experience with my younger patients diagnosed with microscopic colitis is that they respond well to treatment but often require a maintenance (longer term) medication to continue to stay well.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
September 2020
Q: My son has colitis he has been on Infliximab for about 4 years his insurance made him switch to a bio-similar Infliximab-abda. He has had two treatments with the new medication and recently presented with two small blood clots, one in each lung. I feel the switch was the cause of the clots. Is there any research on side effect occurring in patients switched to a biosimilar after being stable on the original medication?
A: I am sorry to hear about your son’s recent complications. There have been multiple studies looking at the safety and effectiveness of biosimilar therapies like your son is on. There is no increased risk in biosimlars than that of Remicade (originator therapy). The things to consider when a patient with IBD develops new blood clots is to ensure that his inflammation is under control on his therapy and evaluation for possible hypercoagulation disorder. But based on what we know in clinical trials it would be hard to link his transition to biosimilar to new blood clots.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
September 2020
Q: I am a 29-year-old Male, taken Humira for Crohn’s for 8 years, and just had a Small Bowel Resection in March. My GI stopped my Humira and opted for me to not restart it. She wants me to try another Biologic and after discussing the options we landed at Stelara. Is it common for one to start Stelara post-surgery after their disease slowly progressed while on Humira which lead to surgery? I cannot find any definitive information regarding my specific combination or scenario.
A: I hope that you are recovering well from surgery. It is hard to say without knowing more details of your case. If you had adequate levels of Humira (>7.5) and active disease at the time of surgery it is reasonable to consider alternative treatment options as a post-op prevention strategy. However there are times (again depending on the case) that you had surgery because the disease already resulted in scar tissue and that the surgery was not a true failure of treatment but it could be been due to progressive disease prior to Humira or subtheraputic dosing of the Humira. If you have a concern about moving forward with Stelara (which is a very effective therapy for Crohn’s disease) I would consider a formal 2nd opinion.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2020
Q: I’m having my first flare up of Collagenous Colitis since first being diagnosed 1 year ago. My GI doctor said to stay on a bland diet and Bismuth therapy for 8 weeks. What exactly is a bland diet? I have been eating a BRAT diet. Only water, low sugar Gatorade and Chamomile tea. I just purchased some Gluten free Bread. What other foods can I add to my diet.
A: Diet prescriptions are very patient and provider specific, so if you are not sure what you’re supposed to eat please ask your provider for clarification. In general, a bland diet means to eat foods that are low fat, and not heavily spiced. Foods that are baked, steamed, boiled, poached would be allowed on this diet. This is similar to a BRAT (banana, apples, rice, toast) diet which is also low in fiber. You don’t have to avoid gluten on a bland diet and you may be able to tolerate plain white bread and pasta. You can also add plain proteins (hard boiled egg, baked/boiled chicken, canned tuna packed in water, lean ground beef, firm tofu, plain yogurt, creamy peanut butter), refined grains (white rice, white pasta, white bread, rolled oats, rice cereal), cooked vegetables (cooked spinach, boiled/baked potatoes), peeled fruits, and pureed beans/lentils. Be sure to include these plant foods in your diet because they help feed a healthy microbiota (the microbes in your gut), provide soluble fiber which will help your colon recover, reduce urgency, and reduce bowel movement frequency.
ANSWERED BY:
Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
Registered Dietitian, Nutrition and Integrative IBD Program
August 2020
Q: I was awaiting a bowel resection, which has been cancelled due to Covid-19. In the meantime my consultant has recommended a liquid/ semi liquid diet along with 1/2 supplementary drinks per day. I am really struggling to adjust; I am constantly hunger and I am confused on what foods are okay? Am I allowed mashed potato and vegetables? Some reports say yes others say no? Am I allowed high fiber cereals like Weetabix, which I previously was told to avoid but now my diet largely lacks fiber.
A: There is no official definition for a “semi liquid diet” so please get clarification from your provider on this. They may have a dietitian that they work with that they can refer you to for individualized nutrition counseling. For our patients needing surgery we sometimes recommend a full liquid or low fiber diet until they can have surgery. A full liquid diet would include foods like milk, pudding, smoothies, yogurt, and soups that
have been pureed (without chunks or hard particles). The next step up would be pureed foods, like mashed potatoes, pureed carrots, apple sauce, pureed meats, creamy nut butters, cream of rice, pureed beans. The mashed potatoes and cooked/soft vegetables may fit your provider’s definition of semi-liquid if they are pureed or easily mashable in your mouth. Weetabix would not be allowed, neither would salads, dried fruits, coconut, mushrooms, or anything that takes a lot of chewing to break down. You may need to eat several times daily, or larger portions if you are getting hungry. You can also ask your provider about nutrition supplements to help prevent weight loss before surgery (which can lead to more complications), give you energy, protein, and vitamins/minerals while you are on this restricted diet waiting for surgery. Some nutrition supplement options include Ensure, Boost, Kate Farms, Orgain, and Modulen.
ANSWERED BY:
Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
Registered Dietitian, Nutrition and Integrative IBD Program
August 2020
Q: My brother was just diagnosed with UC and has been out of the hospital for a week. He is unable to keep food down and has lost 25lbs and counting. What are some suggestions on things he can eat for protein and fat?
A: A registered dietitian can help your brother understand which foods to eat to help regain his weight and recover from his recent hospitalization. Protein will be important to help him recover, and energy from soft foods will help him regain weight. Sometimes high fat foods can make symptoms worse. Some foods he should try to include are: Baked chicken, firm tofu, plain yogurt, creamy nut butters, plain rice/pasta, sourdough bread, steamed vegetables, peeled fruits (apple sauce, banana, melon), and pureed beans. Beans are really good for the colon as they are fermented by gut bacteria to produce anti-inflammatory short chain fatty acids. Too many beans at once can increase gas and bloating, so he should try small portions initially (1/4 cup to ½ cup).
When he’s feeling better, and if it’s ok with his doctor, he should try to eat more high fiber foods (whole fruits, salads, whole nuts, seeds, beans, whole grains) as these will help stimulate the growth of good microbes in his gut and prevent chronic illness like diabetes, heart disease, and high blood pressure.
ANSWERED BY:
Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
Registered Dietitian, Nutrition and Integrative IBD Program
July 2020
Q: My fiancé was diagnosed with ulcerative colitis (UC) 13 years ago and says he never has had a major flare since his initial diagnosis. It is controlled with Lialda (mesalamine) and he gets colonoscopies once or twice yearly. He has pancolitis and each time they see quite a bit of inflammation and take many biopsies. Can you have active disease without symptoms? Is it worth the risk of additional side effects to step up treatment to reduce inflammation despite no symptoms?
A: It is certainly possible to have ongoing inflammation without symptoms. Based on your description of the colonoscopy findings, the disease is not well-controlled on current therapy. It’s always important to have a discussion with the gastroenterologist about the risks and benefits of each medication option that is being considered in order to come to a thoughtful decision that is shared, and one with which everyone is in agreement. Remember: the risks of ongoing inflammation on colonoscopy, including flares and hospitalization, surgery, and malignancy, are oftentimes bigger than the potential risks of the medications used to treat the ulcerative colitis, especially when it is severe. Symptom control is important, but ultimately, we must also strive for healing of the lining of the colon (called “mucosal healing”) and symptom control in order to give patients the best chance of being healthy in the longer term.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
July 2020
Q: I have Crohn’s and have been on prednisone for more than 20 years. Is this normal or ok to be on this medication for so long.
A: The short answer is no. The longer answer is that prednisone is a medication that should only be taken in the very short term, and with a finite plan in place for a longer-term, safer medication to take that avoids steroid use. Long-term steroid use is wrought with side effects and is not a safe choice for treatment of inflammatory bowel disease. It is crucial to speak with your gastroenterologist to come up with a formal plan to transition you safely from steroids to a steroid-sparing medication that has been shown to benefit patients with Crohn’s disease.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
July 2020
Q: I was diagnosed with collagenous colitis (microscopic) 8 yrs. ago. I would like to know if budesonide is a successful treatment for this condition. My doctor recommended it, but I am concerned with the side effects. What is the maximum amount of time that this medication should be taken.
A: Budesonide works very well in patients with microscopic colitis, and studies pitting the medication against placebo show that those patients who took budesonide did significantly better than the placebo group. Even though budesonide is a steroid that has little systemic exposure because of how the body metabolizes it, we do not like to use budesonide in the long term, because adverse effects of long-term steroid use is not to be ignored. Generally, for microscopic colitis, the recommendation is to be on the medication for about 6-8 weeks, and then begin a taper and eventually come off the medication entirely.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
July 2020
Q: I was diagnosed with UC one month ago. I am a male in 60s and in very good physical condition - except for UC. I have taken prednisone for 4 weeks, tapering down each week from 40mg a day to 10 mg and now finished. I just started a course of mesalamine by mouth and a suppository, and it seems to be working. I’m worried about hair loss, and if there are any ways to overcome this specific side effect.
A: It’s great to hear the mesalamine is working well to treat your symtoms and the inflammation. Unfortunately, hair loss is a known potential side effect of mesalamine. It is reported to occur in <3% of patients. There are other reasons for hair loss in patients with IBD: telogen effluvium, which usually occurs in the context of active disease, nutritional deficiencies, and stress, for example. Speaking with a dermatologist about concerns of alopecia, or hair loss, may help with overcoming this problem.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I have Crohn’s disease and was recently diagnosed with Immune thrombocytopenia purpura (ITP). How common is it in Crohn’s patients? What are some concerns I should discuss with my doctor.
A: ITP in inflammatory bowel disease (IBD) is considered rare, with less than twenty cases reported in the medical literature. It is a type of “extraintestinal manifestation” of IBD, or a condition that patients with IBD may have that is unrelated to the gut, but is directly related to having the disease (ex include joint aches, eye or skin conditions, and blood disorders like ITP to name a few). Concerns to discuss with your doctor would be if any medications used to treat ITP interact with medications used to treat Crohn’s disease, or could exacerbate symptoms or cause worsening inflammation.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I have ulcerative colitis and I want to get breast augmentation (probably a lift with implants). I have been in remission for years and in good shape. I take Apriso (mesalamine) to stay in remission. Is it safe to get cosmetic surgery? I am concerned about a possible flare up.
A: If your symptoms are well-controlled, and your colon looks healthy on colonoscopy, you are in what we would characterize as “deep remission”, which is the goal we strive towards in our patients with IBD. For an elective surgery unrelated to the bowel, this is the ideal position in which to be. A potential flare-up is always a concern, especially when the body is subjected to stress, but some flare-ups are ultimately not in anyone’s control. However, positioning the surgery at a time when you are in deep remission is the wisest choice, and one you should discuss with your gastroenterologist before going ahead with the surgery.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I am 33 years old and had a colonoscopy recently because I had blood in my stool. The doctor says I have ulcerative colitis but then I found out he took biopsies. I am wondering the purpose of the biopsies are since he knows what is wrong with me.
A: A diagnosis of inflammatory bowel disease (IBD) requires many types of testing – taking a detailed history about a patient’s symptoms, family history, and tobacco history/exposure, for example, is one crucial part. Other important information to gather includes bloodwork and stool testing, colonoscopy findings and biopsy samples, and sometimes imaging tests (cat scan or MRI for example), and sometimes even additional testing still. Taking biopsies during the colonoscopy is standard when a diagnosis of ulcerative colitis is suspected.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
May 2020
Q: I have Crohns disease and require monthly B12 injections as I cannot absorb it through my small intestine. I'm not able to get my B12 shots during the current Covid 19 crisis because my physician’s office is only seeing very ill patients. My physician ordered a prescription B12 nasal spray, but it's not covered by my health insurance and cost is $6,000 per month. What is my best OTC, non-pill-form option for me during this time? My last B12 injection was in early February.
A: As you mentioned, some patient’s with Crohn’s disease have impaired ability to absorb vitamin B12 taken orally (whether as pills or in the diet). Therefore, monitoring of B12 levels and correction if needed will be prescribed. In general, total body stores of vitamin B12 are approximately 2-5mg with about half of that in the liver. If B12 intake stops, deficiency typically does not develop for at least 1-2 years. So, it may be reasonable to wait till your doctor is seeing patients in clinic again and then resume your prior injections. Alternatively, there are studies that showed taking high dose (1000 to 2000 mcg) oral vitamin B12 daily can still be absorbed (about 1% of what is ingested) and maintains B12 concentrations.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
May 2020
Q: My adult niece has UC and was on prednisone for 4.5 months. Once tapered down she seemed to experience a psychotic episode. While doctors were able to mitigate the episode, they took her off of Adderall which she desperately needs to manage her day. Is it common for prednisone to lead to psychotic events (and how long they last?). What can one take in place of Adderall that won’t feed the psychosis?
A: This is an important topic and can be quite distressing to patients and families. Prednisone is an effective short-term treatment for patients with ulcerative colitis; however, a known side effect of it is psychosis. There is limited research on how often this occurs, but the data suggests <10% of patients develop psychosis, and this is more common with higher doses (>20mg daily) for a longer time period. Keep in mind, prednisone is used as a bridge to another therapy and ideally other medications will be used long term to control UC symptoms. Once stable on another medication, resuming previously used medications, such as Adderall, under the supervision of her PCP may be possible.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
May 2020
Q: I am concerned about the Coronavirus. I have Crohn’s and I’m on a biologic. Are there any particular concerns or precautions IBD patients should take?
A: Information on the coronavirus is evolving daily. The current recommendation is universal precautions, with strict hand-washing and avoidance of individuals displaying flu-like symptoms. More information
on IBD patient guidelines, high risk groups, updates and recommendation on IBD medications and other important information is available on the Crohn’s & Colitis Foundation website at:
https://www.crohnscolitisfoundation.org/coronavirus-update/adults
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
April 2020
Q: I am 22 years old and have had Crohn's disease for 6 years with no other comorbidities. I've had anal skin tags and fissures during this time, and they have become progressively more irritating and painful. I've tried sitz baths and diltiazem, but they haven't helped. My GI and a colorectal specialist did not recommend removal. Are there any safe home remedies you can discuss to decrease the swelling, shrink the skin tags, or remove them all-together?
A: a. Anal fissures and skin tags are frustrating complications of Crohn’s disease. Anal fissures are ulcerations in the lining of the anal canal due to underlying inflammation, which can lead to bleeding and anal pain. These can be associated with skin tags (also known as acrochordons) and also cause discomfort. In general, persistent anal fissures may be a sign of continued inflammation related to Crohn’s disease, so speaking with a gastroenterologist to optimize Crohn’s disease therapy is recommended. Additionally, therapies, as you mentioned, such as warm sitz baths, topical analgesics and medications, such as topical nitroglycerin or nifedipine have shown benefit. These will be used for 1-2 months and then a response is assessed. In general, medical therapies will be pursued to manage anal fissures, since surgical options carry the risk of fecal incontinence and poor wound healing.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2020
Q: I’m 57 and have had Crohn’s in my colon for decades. I went through each of the biologics one by one until they each failed. I had a total colectomy last August and now no longer take biologics or prednisone. Two months after surgery I started having severe muscle/tendon and joint pain. Is this refractory inflammation after being on biologics? Will it go away. over time?
A: It is important to remember that Crohn’s disease can lead to inflammation anywhere along the gastrointestinal tract, from the mouth to the anus. So, despite the inflammation previously being localized to the colon, the possibility for recurrence in other areas of the GI tract should be explored. In terms of joint manifestations of Crohn’s disease, they are more common in patients with large intestine (colon) involvement. Blood tests can be checked to broadly evaluate for inflammation but can reflect both inflammation in joints as well as the intestine, so they can be of limited value. Follow up with a gastroenterologist to evaluate for recurrent Crohn’s disease and possibly a rheumatologist may be warranted.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
March 2020
Q: Does pancolitis affect life expectancy? Also, what is the risk of colon cancer in people with pancolitis?
A: Life expectancy can be affected in patients with ulcerative colitis or Crohn’s colitis when they have at lease one third of the colon involved. The increase in risk of colon cancer is about half a percent per year after 8 years of disease. For example, after 16 years of ulcerative pancolitis, the risk for colon cancer is 4%. If you’ve had the disease for less than 8 years and have no other risk factors like family history of colon cancer, then there is no increased risk to you for cancer. An exception is in those patients with ulcerative colitis and primary biliary sclerosis (PSC). The risk for colon cancer starts to increase before 8 years. The key in any case is the keep the colon in a state of remission and zero to minimal inflammation throughout the duration of disease and to attain appropriately scheduled colonoscopies for early detection of “dysplasia,” precancerous areas or polyps.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I have Crohn's and began taking Remicade in 2017 with no issues. At the end of 2019 I started having pains in joint/muscle. The pain started in the thighs, moved to the knees. It moves around the body to different joints daily or every 2-3 days. It gets bad into the evenings and calms down during the day. I also have a rash around the under arms and itchy welts that appear on the torso once in a while usually the size of a golf ball. Can these symptoms be from the Crohn or medication?
A: Extraintestinal manifestations can occur in up to 25% of patients with Crohn’s. These can be rashes, joint pains or vision problems. We usually recommend working with a rheumatology and dermatologist in these cases. Sometimes, medications like Remicade can cause lupus-like reactions or even types of joint pain called “arthralgias.” Another phenomenon that may be happening is that your body is making antibodies against the Remicade in your body. This can be tested for with a standard blood test that will also check for the appropriate concentration of Remicade in the blood.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I am a 45 year old female newly diagnosed with Moderate UC on both left and right sides of my colon. My GI and I have narrowed options down to Imuran or Remicade/Humira. My main concerns are immune suppression and side effects. Can you share your experiences from your patients and input to help inform my decision? I realize treatment response and side effects are highly individualized, but I am trying to get a crowd source view of the two to help inform my decision with my doctor.
A: With the advent of improved understanding and monitoring mechanisms with the “biologic” medications like Remicade and Humira, we’re realizing these have a better safety and efficacy profile than the Imuran type medications. Make sure you attain age-appropriate vaccines, including influenza and pneumococcal series, which will help with infection risks. Between Remicade and Humira, it’s really up to the patient whether they want infusions (Remicade) every 2 months or injections (Humira) every 2 weeks. Safety and efficacy are similar in this class. Also consider Entyvio or Stelara as future options.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I am wondering about the safety of using zinc supplements with Crohn’s. My daughter has Crohn”s and I have given her a zinc supplement to use to help recover faster from a cold virus. There are warnings on the bottle of zinc stating that people with autoimmune diseases should avoid zinc. Is this a valid warning for people with Crohn's?
A: On the contrary, zinc deficiency, along with iron, vitamin D and vitamin B12, can be seen in Crohn’s disease. I would recommend checking zinc levels and if appropriate and normal no need for supplementation. Short courses of zinc supplements for viral infections is considered safe.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: My 24-year-old granddaughter was diagnosed with small bowel Crohn’s, December of 2019. She met with the GI doc in Jan 2020. I went with her and the doctor did a good job of explaining her results from her tests and said his plan was to start her out on a course of Prednisone for 8 weeks. After completing the Prednisone his plan is to start her on Humira. I'm concerned that she is starting on these drugs too soon. Couldn't diet modification be tried first?
A: There are some recommended dietary modifications that can be used as a complement to traditional therapy for Crohn’s. Please see the Crohn’s and Colitis Foundation website. Most patients need biologic therapy with Crohn’s to truly alter the disease before it gets too late and we run into complications like narrowed bowel (strictures), infections (abscess) and abnormal connections (fistula). Some studies show us that if you wait an average of 13 months before starting biologic therapy then the risk for these complications rises dramatically.the biggest adverse effect in Crohn’s is under treated disease, not the medications.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I was diagnosed with UC- pancolitis in Sept 2019 and given 1.5mg Apriso. This helped for a month with less BM/blood but symptoms returned after about 45 days and treatment failed. He ordered fecal calprotectin with result of over 2000 μg/mg, yes over 2000. I’ve been on prednisone for 8 weeks. My doctor recommended Entyvio but my insurance said no. How can my doctor get my health insurance to approve Entyvio bypassing step therapy of Humira/Remicade?
A: Humira or Remicade are acceptable therapies for your current situation. Please see answer posted this month for a discussion on biologics. If you absolutely want Entyvio, there are resources on the Crohn’s and Colitis Foundation Website for appeal letter samples that you can send to the insurance company or to your doctor office to use as a template.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
February 2020
Q: I have Crohn’s Disease. A lot of foods such as dairy give me painful side effects like gas, stomach aches or nausea. Can you help give me a list of nondairy alternatives?
A: Some patients with IBD may also have underlying lactose intolerance. Lactose is the type of sugar in milk and dairy foods.
To digest lactose, people need a specific enzyme in the small intestine called lactase which can be impacted by inflammatory bowel disease. If you have trouble digesting lactose, you may experience diarrhea, bloating, stomach pain, and gas symptoms. Limiting or avoiding milk and dairy products can help ease these symptoms.
Taking lactase supplements before having milk and dairy products may also help. Milk and dairy containing foods are a primary source of calcium, so making sure to include other sources of calcium in the diet or speaking with your healthcare provider about a multivitamin would be beneficial.
Dairy/lactose free alternatives include lactose-free milk,
nondairy creamers, nondairy whipped toppings, soy based sour cream, and other almond, cashew, oat, pea protein, rice, or soy based dairy alternatives. Some people with lactose intolerance can safely eat dairy foods that contain a little lactose (less than 1 gram lactose per serving) such as aged cheese. Be sure to check product ingredients. Avoid foods made with butter, cream, milk, or milk solids. Also avoid products when the ingredients list states, “may contain milk.”
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: I recently was diagnosed with IBD. I am in college and have been doing a lot of walking around campus which is tough due to my joint pain. I have been eating a lot of sugar lately too. Could my joint pain be related to dietary sugar intake?
A: It has been demonstrated that dietary sugar consumption contributes to increased inflammatory processes in humans. The evidence suggests that eating too much added sugar and too many refined carbohydrates can cause inflammation in the body. Processed sugars trigger the release of inflammatory messengers called cytokines. According to research, it has been shown that dietary sugar intake especially sugar-sweetened beverages may be a key stimulus of subclinical inflammation, as measured by the inflammatory marker C-reactive protein (CRP).
Added sugars contribute sweetness and although they add calories, offer minimal nutrition. Make sure to read nutrition facts labels carefully. Many foods now list added sugar separately. You also can find added sugar by reading the ingredients. On an ingredient label, sugar may appear under many names. Some of the most common ones include cane sugar, evaporated cane juice, corn syrup, high-fructose corn syrup, raw sugar, brown sugar, honey, maple syrup and brown rice syrup. Dietary Guidelines for Americans recommends limiting added sugars to no more than 10% of daily calorie needs, which is about 12 teaspoons (48 grams of added sugar) on a 2,000-calorie diet.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: I have mild-moderate Crohn’s since the end of 2014. There are about 60+ foods that make me sick ranging from; milk, pasta, apples/berries, most greens, eggs, bread, oatmeal, corn, nuts, to beef/pork, etc. My intolerance is the same with/without meds. Can something else going on?
A: If gastrointestinal symptoms are still present after food intake regardless of disease activity, discussing this with your health provider could prove to be beneficial. Some patients with inflammatory bowel disease experience intolerance to food items due to underlying disease related inflammation; however, when IBD is in remission and symptoms are still being experienced after eating, this may be due to a specific intolerance, such as lactose or fructose intolerance, or Irritable Bowel Syndrome in addition to IBD.
A low-FODMAP diet may help with IBS and in some cases can help reduce IBD symptoms, but research doesn’t support its use for reducing IBD inflammation. This diet is not typically recommended if you are in a flare, but it can be helpful if you struggle with gas, cramping, and bloating and dietary intolerance. FODMAP is an acronym for Fermentable, Oligo-, Di-, Monosaccharides and Polyols. The language may sound complicated, but it is a diet that cuts back on a group of sugars that can be poorly absorbed by your GI tract. This includes foods containing fructose, lactose, sugar polyols (sorbitol and mannitol), fructans (found in garlic, leeks, artichokes, and wheat), and galacto-oligosaccharides (found in lentils, chickpeas, and black beans). Meeting with a dietitian can help identify which of these food items could be potentially worsening symptoms, and which foods can be reintroduced without exacerbating symptoms. Keeping a food log may also be helpful to help correlate specific symptoms with food items.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: My 7-year-old has mild ulcerative colitis. Would it be safe to try intermittent fasting diet with him?
A: Research has shown that dietary changes can have a big impact on inflammatory bowel disease management. Intermittent fasting (IF) is an eating pattern that cycles between periods of fasting and eating, traditionally used for weight loss. To find out whether intermittent calorie restriction or fasting plays a role in reducing inflammation, a University of Southern California preliminary study published in Cell Reports in March of 2019 tested cycles of a low-calorie, low-protein, plant-based diet on mice with inflamed bowels. In the mice given cycles of the fasting-mimicking diet, gut inflammation and other signs of IBD appeared to improve. Additionally, researchers tested three cycles of a fasting-type diet in 100 healthy people. People who started the study with higher levels of certain inflammatory markers had noted improvements in certain serum indicators by the end of the fasting diet, which may point to a role in lowering inflammation.
However, any type of fasting or restrictive diet can be difficult to adhere to and may not be suited for IBD patients given their increased risk for malnutrition. More research is needed on this particular diet such as a clinical trial to test the safety and efficacy of these fasting diet cycles in people with IBD. Intermittent fasting is not as of now recommended as a way to help treat IBD and is also generally not recommended for individuals in periods of rapid growth, such as children and adolescents.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2020
Q: I am in a relationship with my girlfriend who has UC and she has just lost all sex drive. She says she still finds me attractive and everything but it hurts and she just doesn’t “get in the mood” anymore really. What can I do? I have hardly had sex 6 times in two years and it is REALLY effecting my mental and daily life as well.
A: Thank you for this question on a sensitive and important topic, intimacy and sex in IBD. I appreciate that you are asking what YOU can do. It’s a good place to start. Expressing how you feel about the current state of your relationship in a compassionate way may open the door to learning how your girlfriend is feeling. Perhaps she is struggling with symptoms that she feels embarrassed by? Maybe due to medication or disease activity she has low energy, fatigue, pain, low sex drive or body image concerns? She may feel sad, depressed, worried or frustrated? All of which can dramatically impact how one wants to engage with their partner. Your girlfriend may desire to be intimate with you, but her physical or emotional symptoms may be a major factor. By opening the door of communication, together you can discuss what your next steps are as a couple.
Establishing care with a therapist who understands the nuances of chronic health issues may be helpful for you. Therapy goals might include having a safe place to express your feelings, learning communication strategies and developing ideas for different types of intimacy that may aid in strengthening your relationship.
If your partner believes that her disease is contributing to her intimacy concerns, talking with her medical team is important. Talking with a gastroenterologist about sex might seem uncomfortable, but this is an important conversation. They need to know many of the most personal aspects of your life because they may be able to help. The doctor may run labs, assess disease activity and/or have some suggestions to aid in stabilizing health which may with time boost mood and sexual desire. If pain or discomfort contributes to the lack of sexual interactions, her doctor may recommend working with a pelvic floor physical therapist. Your girlfriend may also benefit from a mental health provider to discuss the various stressors/complexities associated with having IBD.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
January 2020
Q: I have Crohn’s and been in a flare up for so long. I am getting depressed. Most days I don’t want to get out of bed to go to work because I am so tired from everything including diarrhea, fatigue, abdominal pain, weight loss and sleeplessness. Doctors are trying to find the right medications to get me in remission. Is there medication I can take or something I can do to get me out of my bad mood. I feel so down and defeated all the time.
A: I am sorry you are not feeling well and commend you for being aware of how your physical health can impact your mood and emotional health. Ensure that you are discussing both physical and emotional symptoms with your gastroenterologist. They may need to run labs (iron deficiency anemia, Vitamin D, B-12, TSH, etc) to see if there are deficiencies that are also contributing to your fatigue, healing and mood symptoms. By treating the deficiencies physical and emotional symptoms may see improvement.
There are different types of medication that can be prescribed to aid with mood stabilization that you can speak with your physician about. However, working with a mental health professional to discuss your depression, learn ways to cope with emotions related to the complexities of IBD and over time gain confidence to manage emotions and stress related to disease management. Sometimes therapy is enough to get you feeling well again, other times a combination of medication and therapy is best. Be open with your physician; ask if they have a referral recommendation for a mental health provider. If you and your team think medication is a next step for your treatment plan, consider consultation with a psychiatrist. You can check www.romegipsych.org to see if there is a mental health provider who specializes in working with people who have gastrointestinal conditions.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2019
Q: I'm 16 and was diagnosed with Crohn's last year. However, I experience severe constipation and have been hospitalized before because of it. Information I read says to eat vegetables when constipated but a lot of the veggies I can't eat because of narrowing. I am currently on methotrexate and I don't want to have to go on biologics. What foods will help with constipation? What other lifestyle and diet changes should be to help with this issue?
A: I am concerned that you may be constipated due to the narrowing that you describe. If your doctor does not think that you need different medications or a surgery for the narrowing then I can suggest some tricks for the constipation. Limited amounts of soft, cooked vegetables and vegetable soup, plenty of water (64 ounces or more) and using a laxative as directed by your doctor can all help. The best lifestyle change can be walking. I suggest discussing with your doctor whether you are at the point where methotrexate is the right choice for you or you might need surgery or escalating therapy. Trying biologicals too late does not help with reversal of disease.
ANSWERED BY:
Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
Clinical Professor- Pediatrics Gastroenterology
December 2019
Q: What is your thoughts on using Senna Tea for constipation?
A: Senna tea can help with constipation but if you have an obstructive stricture, this will not be a good idea. There can also be side effects of the tea so be sure to discuss the use of any products with your health care provider.
ANSWERED BY:
Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
Clinical Professor- Pediatrics Gastroenterology
December 2019
Q: Will almond milk or peanut butter cause inflammation or will it aggravate Colitis ? I know eating nuts and seeds in their solid natural form is hard to digest but what if the food is in a liquid and or butter form, i.e. almond milk or peanut butter ?
A: Almond milk or peanut butter will not cause any harm. Nut by themselves are not harmful, we recommend avoiding nuts in patients with strictures in case undigested material gets impacted.
ANSWERED BY:
Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
Clinical Professor- Pediatrics Gastroenterology
November 2019
Q: I have been reading a lot about my Crohn’s and research into serotonin and dopamine uptake imbalances found in Crohn’s patients. I am looking for more information on the subject. Can you direct me to any resources on this subject?
A: I’m sorry, we don’t know enough about this as it pertains to IBD. For example, >95% of our body’s serotonin is in the gut, and we know that this an important molecule as it pertains to intestinal motility, sensation, and secretion. This is why a lot of us try SSRIs (typically used in depression) for symptoms of pain or diarrhea. However, whether this is a something we can manipulate to treat IBD has not been studied well, mostly because we don’t have a full understanding of the mechanisms of serotonin in regards to IBD inflammation.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: Is there research that suggest the likelihood of UC developing into Crohn’s?
A: Most of us do not think that UC develops into Crohn’s. It’s true that in 5-10% of patients, we don’t always know the difference, since there is a lot of overlap at least clinically so we categorize people as “indeterminate colitis” when we are unsure of the type of IBD. I have patients who have initially diagnosed with UC who in reality find out later to have Crohn’s, and this is in spite of all of our technology and all of our experience seeing IBD patients all day. It’s very challenging and not always straightforward.
I’ll also say , however, that we are treating our UC and Crohn’s patients more similarly these days. While most people hear Crohn’s and associate this with a worse diagnosis, we all know Crohn’s patients who are very mild, and UC patients who are very sick.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: I have Crohns and I am suffering immensely from the extra-intestinal manifestations that are presenting themselves as erythema nodosum and joint pain, and most painfully - Achilles Tendonitis. I haven't seen much information regarding Achilles Tendonitis linked to Crohn’s flares. Can you offer any insight and recommendations for relief?
A: Yes, Achilles tendonitis can be an extra-intestinal manifestation of IBD. It’s also known as enthesitis, which we often treat like other EIMs, but musculoskeletal EIMs are the most common but often difficult to treat, which is why we usually enlist our rheumatologists to help us.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: I have been given mesalamine enema and 4 mesalamine pills daily. It has only been one week since my diagnosis and medications, how long before I start seeing a more normal stool? Now my stool is water and sometimes droplets of blood. I am going to the bathroom about 5 times a day, this is how frequent I was going before as well.
A: Usually we give this a few weeks, but I would say that mesalamine should start to work within a few days. If it does not work, some people have the opposite effect (makes their diarrhea worse) or your colitis may just be more severe that the mesalamine is not enough. The latter is usually what happens. This is when I’d be starting to discuss potentially needing the biologic therapies if you are not doing significantly better on the mesalamine.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: I was diagnosed with Crohn's colitis in 2009. After several good years on Remicade, despite maximal dosage, the drug has now failed. After about 6 months on Xeljanx, that drug has now failed as well. My GI thinks it is time for me to seriously consider colectomy. I am having a tough time with this idea. How do I decide if it is worthwhile to try Entyvio or a clinical trial. What information can you share that can help me make the best decision?
A: There are other medications that you can try. Since you responded to remicade initially, adalimumab (humira) and certolizumab (cimzia) is a choice. Keep in mind that there is vedolizumab (entyvio) and also ustekinumab (stelara), in addition to clinical trials. So, there are a lot of choices out there to consider. Surgery is reasonable to consider, depending on how sick you are, but you should talk to your doctor about other non-surgical choices above.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: My adult son has Crohn’s disease and now into his 5th year of remission on Remicade. He is 23 and has been offered a job outside of the US. He is seeking recommendations/suggestions on alternative treatment that doesn't require IV. He is seeking other options that may allow him to freely travel without infusions every 8 weeks. Any information is on the pros and cons of switching medication or other suggestions is appreciated.
A: If he is able to get Remicade outside of the US, that would be ideal. I have had patients in this scenario. Alternatively, you can switch him to Humira, which is in the same class. Finally, if he’s doing very well, you may want to consider doing a colonoscopy with your GI doctor to see if he can de-escalate off of remicade. This may or may not be appropriate as I don’t know his IBD history fully, but your doctors should be able to help you to trouble shoot this, as it’s a common scenario.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: I have Crohn's and have tried several medications, and none have seemed to help. My doctor is discussing the use of a biologic treatment. What is the best way to determine which biologic treatment to use?
A: There isn’t a clear winner with the different biologics. I would say that it depends a lot on what your insurance will cover, and where your Crohn’s disease is located. If you are not doing well on the other medications, then I too would recommend biologics, and all of them would likely be better than what you are doing now. The Crohn’s and Colitis Foundation has a great web site where they discuss all of the different medications, but your doctor should hopefully steer you in the right direction.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: What has been the success or failure of stem cell treatment for ulcerative colitis? How do I find stem cell clinical trials for the treatment of UC that are actively recruiting?
A: The data for stem cells is more common in Crohn’s disease, which overall studies have shown slight or no benefit, which is disappointing given the initial potential. I am not aware of many studies in UC. While this is still a promising field, the good news is that we so many more therapies for UC that are being tested, and we are understanding the safety issues better as well.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: Will almond milk or peanut butter cause inflammation or will it aggravate Colitis ? I know eating nuts and seeds in their solid natural form is hard to digest but what if the food is in a liquid and or butter form, i.e. almond milk or peanut butter?
A: Please note - nuts and seeds do not increase inflammation or worsen colitis. They are great foods that have fiber, healthy fats, protein, and antioxidants. That said, during a flare the whole food forms may be harder to digest or feel a little irritating to the GI. So the modified texture such as smooth nut/seed butter (almond butter, sunflower butter, cashew butter, etc) or milks (coconut milk, hemp milk, etc) can definitely be more conducive during periods of inflammation. Make sure to reduce added sugars, processed oils, and additives such as carrageenan when choosing nut/seed butters or milks.
ANSWERED BY:
Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
Founder of Alanna Cabrero Nutrition
November 2019
Q: I'm 16 and was diagnosed with Crohn's last year. However, I experience severe constipation and have been hospitalized before because of it. Information I read says to eat vegetables when constipated but a lot of the veggies I can't eat because of narrowing. What foods will help with constipation? What other lifestyle and diet changes should be to help with this issue?
A: My recommendations for patients who have both constipation and narrowing of the GI are the following:
1) Slow down and chew your food well.
2) Drink enough liquids (ideally water) while eating.
3) Modify textures, especially when it comes to fiber. Therefore, cooking, liquefying (smoothies, soups, etc), grinding, pureeing, or finely chopping can help boost fibrous foods without making matters worse.
4) Spread out your fiber throughout the day.
5) Move after meals to aid digestion. Ideally, walk 5-10 minutes after bigger meals.
6) Make sure you are squatting on the toilet to aid proper evacuation of bowels and reduce straining. You can use something like the Squatty Potty, but it can also be a simple step stool.
7) Consult a dietitian. There may be supplements or other specific suggestions that can help you. Constipation varies patient to patient, so I may use magnesium, fiber supplements, abdominal massage, or coffee to stimulate bowels, to mention a few, but it may not be favorable to everyone.
ANSWERED BY:
Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
Founder of Alanna Cabrero Nutrition
October 2019
Q: Tengo la enfermedad de Crohn y me gustaría saber si está bien tomar probióticos. ¿Hay algún riesgo de tomándolos junto con mi medicación habitual de Crohn? (I have Crohn’s Disease and would like to know if it is ok to take probiotics. Are there any risk of
taking them along with my regular Crohn’s medication?)
A: Si bien no se ha demostrado que los probióticos sean adecuados como tratamiento de Crohn, algunos pacientes notan un beneficio de los síntomas al tomarlos. No hay riesgo de tomarlos con la medicación habitual de Crohn. (While probiotics have not be shown to be adequate as a Crohn’s treatment, some patients notice a symptom benefit with taking them. There is no risk to taking them with your regular Crohn’s medication.)
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I have 30+ year history of Crohn’s Disease. I have been on Humira for last 8 years with deep remission. I now have excessive and sudden joint stiffness and pain along with minor skin rashes. Can this be related to the medication or just another possible autoimmune issue?
A: Either one is possible. It could be the medication or another new autoimmune issue. I recommend consulting with a dermatologist and rheumatologist to discuss this and start an evaluation together with your gastroenterologist.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I have UC and have recently been prescribed uceris rectal foam to manage a flare up. I am supposed to take the med for 2 weeks. I am also breastfeeding my newborn. Is this medication ok to take while breastfeeding?
A: Yes, it is. The absorption of uceris topical foam is minimal. Of what is absorbed, most is broken down by the liver and very little will every make it to the blood stream or the breast milk.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: How long is it safe to stay on budesonide? I have lymphocytic colitis, and every time my doctor had me taper off my symptoms came right back. Now he says I may need to stay on it indefinitely. What are other treatment options for lymphocytic colitis?
A: While the systemic steroid exposure is low, there are some adverse effects of long-term budesonide treatment, the main one being adrenal gland suppression. Some patients also experience some other steroid side effects, such as poor sugar control in diabetics or irritability. Budesonide’s use is safest when limited to 12 weeks. The return of symptoms is of course a limitation. If long-term budesonide use is planned, use should be accompanied with discussion of risks and benefits and using the minimum effective dose that controls symptoms (while we start at 9 mg, many patients can taper to 6 mg or 3 mg if remaining on the budesonide). Another option is to use intermittent recurrent courses of budesonide if able. Some other tips include discontinuing any culprit medications (such as non-steroidal anti-inflammatories), adding loperamide or cholestyramine to the regimen or adding bismuth subsalicylate. Other options (based on small case series) for long-term maintenance treatment of lymphocytic colitis are biologic agents (anti-TNF like infliximab or adalimumab) or immunomodulators (such as azathioprine).
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I was diagnosed with ulcerative colitis in 2016. In a recent colonoscopy there was no ulcers and no inflammation found. I am presently on mesalamine, gained a lot of weight and still have 4-5 soft bowel movements a day. If I have no ulcers and inflammation why do I continue to have so many bowel movements?
A: Other causes for the frequent bowel movements could be lactose intolerance, a motility disorder in the GI tract, or an infection, or celiac disease, among others. A work-up could be started especially if this affects your quality of life. Sometimes there is some scarring in the recovered colon and that could result in continued frequent bowel movements.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: My wife and I are trying to conceive. I have UC, have been on mesalamine 4.8g for years with no flares. Got a flare about 2 1/2 months ago and have been taking prednisone 40mg to help. I was told I will need to switch to a biologic in coming weeks. Is there any issue with trying to conceive while taking the prednisone and soon the biologic?
A: No. There are no issues in men and you can try to conceive while taking prednisone and biologics. Avoid the medications: methotrexate and sulfasalazine for 3 months as they can affect/lower sperm count. Otherwise for men, it is okay to start a biologic with the eventual goal of tapering off the prednisone soon. Women should not try to conceive in a flare due to the risks of active inflammatory bowel disease to the pregnancy.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: My daughter was diagnosed 11 years ago with Crohn’s disease. She has been in remission without meds for the last five years. Recently diagnosed with recurring anterior uveitis and burning tongue. A new GI Dr and had all the tests done again and diagnosed she was diagnosed with mild to moderate Crohn’s. There was no discussion on previous meds that helped the doctor just said we treat Crohn’s from the top down now, and he wants her on adalimumab. Is top down the way of future treatment?
A: It is true, an aggressive treatment approach and starting with biologics in a top-down approach has been showed to help Crohn’s patients more than the step-up approach in moderate-severe Crohn’s. This minimizes the long-term disease complications. The choice of adaliumumab its reasonable because it is a treatment for uveitis as well as Crohn’s, however, other findings such as colonoscopy results, severity of symptoms are important in order to make this decision and estimate the risk of Crohn’s.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I was diagnosed with Crohn's 10 years ago and on the Remicade right now. But when I have a flare ups, Pentasa works great to calm down symptoms. I asked my doctor to prescribe Pentasa and he said that this medication is absolutely NO for Crohn's (only for Colitis) according some sort of recommendations. What is the harm in taking Pentasa with my Remicade for CD if it works to reduce my symptoms?
A: Pentasa and other 5ASAs have not been showed to have a benefit in achieving remission in Crohn’s studies/clinical trials. These studies were all pooled together and still there was no benefit. While pentasa does not suppress the immune system, and is overall safety profile is good, it has side effects like nausea/headache/rash/ and other rare side effects (such as pancreatitis, pericarditis, nephritis). It is a good practice to make sure that every medicine you take is truly needed. That said, I encourage a discussion with your doctor regarding the definition, duration, and severity of flares that you experience and based on the nature and frequency of the symptoms you can together decide if additional work-up is needed to define them better. This might help guide how you treat them.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
September 2019
Q: My 12-year-old son was diagnosed with UC/pancolitis in March 2018. He is trying different meds.He says he has constant stomach pain. Sometimes it is worse than other times, but it never fully goes away. A lot of the time he does not want to go to school because of fatigue and hurting but then he will cut up with friends and play xbox in his room. This disease is new to both of us and I am trying to understand what he is going through. How can I best support him?
A: I think the most difficult aspect of treating any patient (but especially children) with a new diagnosis of UC is allowing time for the patient to understand that UC is a chronic illness and that any treatment will take time to work. For a patient with a relative new diagnosis, this is the first time they haven’t felt better quickly after seeing a doctor. For most, patients see a doctor for a more mild ailment and it’s a quick fix with an antibiotic or a tincture of time. With UC, every treatment takes time to start working. For your son, I would suggest supporting him through the abdominal pain with comfort foods that don’t increase his GI symptoms and rest (reading, meditation, even video games) for his body to start to heal. I would also focus on the fact that despite his current symptoms, he will get better over time. Although the disease is life long, most patients return to their activities and “forget” they have UC.
I would also suggest that you look into your local Crohn’s and Colitis chapter and see if there are parent or peer mentors for the both of you. Sometimes, hearing what other parents had to go through and techniques they used can be very helpful. Some pediatric hospitals also have peer mentors that the children can get in touch with, whether electronically or in person.
Finally, I find it very helpful for patients who have been newly diagnosed to speak with a behavioral specialist (psychologist) as they can offer a variety of helpful coping skills for when the disease is active.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
September 2019
Q: My 13 old son was diagnosed w/mild case of Crohn's a year ago. Pentasa is not working for him and the Dr wants him to go on a biologic. Entyvio seems safest from what I have been reading. Can children be on Entyvio or should another biologic be tried first?
A: Great question! This is a really important question and one that does not have a straight-forward answer unfortunately. The short answer is, we just don’t know. The anti-TNF medications (infliximab and adalimumab) are the only FDA-approved biologics for pediatric patients with moderate-severe Crohn’s disease. Use of any other medication, like Entyvio, is considered off-label use. Entyvio is FDA-approved for adults with ulcerative colitis and Crohn’s disease. With that said, pediatric gastroenterologists have been asking the same question, “is there a certain group of children/adolescents that would benefit from Entyvio as their first biologic?” We don’t have the answer yet. There is some data to support that this could be a good option for some patients and I would encourage you to have this discussion with your primary GI physician.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
September 2019
Q: My 12 year old daughter was diagnosed with UC, with high grade dysplasia in her colon and low grade dysplasia in her small intestine. She started Prednisone and mesalamine 6 days ago. After consulting with other adult doctors, they have recommended she start Humira or Remicade. Both of these drugs seem pretty serious but is one preferred over the other. They want to scope her again in 3-5 months. Does dysplasia usually go away when the inflammation is reduced?
A: Only infliximab (Remicade) is FDA approved for pediatric UC. Adalimumab (Humira) is FDA approved for adults with UC, however, Humira is often used off-label for pediatric UC. Depending on the severity, Remicade is often preferred given its relative quick onset of action. If your daughter is admitted to the hospital, then Remicade is the preferred biologic. Both medications have a good safety record in children.
In regards to the dysplasia question. This is relatively uncommon in children, especially at diagnosis. I would agree with close surveillance. I would also suggest that the biopsies be reviewed by a either a pediatric or adult pathologist who is an expert in intestinal dysplasia to confirm the diagnosis.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
August 2019
Q: I recently started Imuran. What preventive measures do you recommend on this drug to help avoid infectious risk? I fly a lot. Should I wear a mask on the plane? I work in a busy family practice medical clinic. Should I change my job if that is an option to avoid so much viral exposure?
A: The best way to protect yourself from infections is with prevention and optimization. First, you should make certain that your non-live vaccines are up to date – flu shot annually, pneumonia vaccine series, hepatitis A and B. As you are on immunosuppression, you cannot receive live vaccines like measles/mumps/rubella, yellow fever vaccine, chickenpox vaccine series. The second mode of prevention is through appropriate protective measures especially during cold/flu season. Hand hygiene and safe food handling practices are important. Being on immunosuppression doesn’t require extreme measures of caution during travel – but practical tips include bringing disinfecting wipes, hand sanitizers, etc to use as needed. You should wear a mask during travel or work if you have cold/flu symptoms as you don’t want to put others at risk for infection. Many people living with Crohn’s and Colitis work within the health care industry, If you work in the health care profession, wear appropriate face shields, eye protection as recommended based on a case by case basis.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I was diagnosed with Crohn’s in January 2019. Starting in February my tongue has been white. I was checked for thrush and it came back negative. My dentist told me to use a tongue scraper but that doesn't seem to be helping. Can thrush be related to my Crohn’s?
A: Thrush is typically associated with a fungal infection that may be related to immunosuppression, particularly steroid use. I would discuss your symptoms with your health care provider as medications, dry mouth, or potentially related to IBD but other causes may be more common.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I’ve had ulcerative colitis for over 20 years. Years ago, I tried Asacol and had an allergic reaction have been told I am allergic to the main ingredient in most uc drugs. I am currently on budesonide and mercaptopurine. I was wondering if some of the new drugs in shot form are safer than steroids. I want to get off long term use of steroids and don’t know the name of the new drugs to ask for.
A: Steroids are associated with the greatest risks of infection, bone loss, and other complications related to ulcerative colitis, particularly with chronic and longstanding use. You are correct to want to taper off prednisone. IF you are steroid-dependent, then mesalamines (which include Asacol) are not likely to be the medications to keep you off steroids, especially with an adverse reaction as you have experienced. The injectable or infusion-based medications you are referring to are called biologics – these are protein-based medications that are used for people who are dependent on steroids or with moderate to severe disease. These agents can induce and maintain resmission (resolution of symptoms, ideally with healing of the colon) and provide the opportunity for people to taper off steroids. Examples include infliximab (Remicade, Renflexis, Inflectra), adalimumab (Humira, Cyltezo, Amjetiva), golimumab (Simponi), vedolizumab (Entyvio). You should discuss potential options with your IBD provider.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I was diagnosed with Crohn’s last year. A year after diagnosis months I had a huge flare. My doctor has recommended Cimzia. I have begun treatment (week zero and week 2 injections complete) but looking for insights on this drug. Due the flare I am also taking prednisone.
I am experiencing a lot of night sweats and fever spikes. Can these be symptoms of the prednisone or Cimzia?
A: These symptoms can be related to either continued Crohn’s disease activity, medication related adverse effects or infections. Please discuss these symptoms, especially if new since starting certolizumab pegol (Cimzia) and have a plan to assess response or non-response to the agent within 8-12 weeks of starting treatment. If you are unable to taper off prednisone or do not see notable improvements, then you and your provider should re-evaluate to see if this is the right medication and the right dosing at the right interval. If you are having any adverse reactions to the medications, then your provider also needs to be aware.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I have UC for 5+ years under control/remission however had a flare up a few months ago and I’m now taking Prednisone to calm it down which is working. I would also like to try CBD oil since it supposed to help reduce for inflammation. What does the research say about the benefits of CBD with UC?
A: This is certainly an area of interest and need for further investigation. The best studies evaluated the effects of cannabis for Crohn’s disease and did not show consistent meaningful results. We do know that certain symptoms of nausea, decreased appetite, potential fatigue/pain may be improved with cannabis, but there isn’t enough evidence-based data to support the use of CBD oil as a primary treatment for ulcerative colitis.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I have a long history of Crohn's disease (originally diagnosed as Ulcerative Colitis 46 years ago). In the past, I've been on Sulfasalazine, Acacol, Cimzia, Humira, Remicade. Currently I'm on Stelara every 2 months, and it's the best by far. However, the cost is prohibitive. I'm hitting a $1,000,000 lifetime health insurance benefit cap this year at age 60. Is it possible to take Stelara less often (once or twice a year) and take something cheaper in between shots?
A: Unfortunately, the data for using ustekinumab (Stelara) for Crohn’s disease is based on dosing every 8 weeks. Extending the interval longer in between injections increases your risk for loss of response, flares and potentially forming antibodies. You should discuss options to help with the costs of obtaining the ustekinumab (Stelara). There are patient assistance and savings programs that may offset some of the costs of the medication.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
June 2019
Q: I have been on infliximab for about 3 months and my hair been coming out and has become really thin. Can this be as a result or the medication or something else. What can be done to stop the hair loss?
A: Hair loss can be a rare side effect of anti TNF agents like Infliximab and it is considered a class effect.
If you were very ill with nutritional deficiencies and emotional stress prior to starting Infliximab, there can be hair loss during recovery which will resolve with time. This is called Telogen effluvium is a form of diffuse, nonscarring hair loss that presents as a transient or chronic loss of hair. Hair loss in telogen effluvium occurs because of an abnormal shift in follicular cycling that leads to the premature shedding of hair.
Best is to consult a dermatologist, who will be able to do further investigations to find the cause and decide on treatment options including considering discontinuing of Infliximab.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
May 2019
Q: I was diagnosed in 1997 with large bowel Crohn’s. I have been on it all, and have only been in remission a few times, not very long. Recently, my doctor told me my disease had inactive Crohn’s and he is saying it is IBS with my Crohn’s. How can I be inactive, if I have massive diarrhea 4-5 hours a day every day? What is inactive Crohn’s?
A: Disease activity is related to inflammation. It is usually evaluated by endoscopy with biopsies or radiologically with CT or MRI of abdomen/pelvis. Disease activity dose not corelate well with patient symptoms in IBD. This discrepancy is more pronounced in crohn’s disease compared to ulcerative colitis. Therefore, you can be symptomatic but have inactive crohn’s disease. In other words, GI symptoms in crohn’s disease does not have to be due to active inflammation. If your disease is inactive, then adjusting crohn’s medications does not going to help with controlling your symptoms.
In this situation it is important to look for other reasons such as infections, bile salt diarrhea, lactose intolerance and functional GI/IBS like symptoms. Other possibility is celiac disease as its incidence is slightly higher in IBD patients compared to general population.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
May 2019
Q: I have had the diagnosis of Crohn's Disease since 1992. In the past 10 years or so, I have had occasional iritis when my Crohn's is flaring. My GI doesn't seem to be concerned, but my optometrist is worried about using steroids too much on my eyes and that it might cause glaucoma. How concerned should I be about using steroid drops on my eyes every 3-6
months?
A: Uveitis occurs in 0.5 to 3 percent of patients with IBD. Anterior uveitis is also called iritis. Uveitis may precede diagnosis of IBD and may be associated with arthritis. It is four times more common in females as compared with males. Prompt diagnosis and therapy with topical or systemic steroid is necessary. Secondary glaucoma and rarely blindness may occur if management is delayed. The course of uveitis usually does not parallel the activity of IBD. Therefore, I would recommend you get evaluation by an ophthalmologist as soon as possible to confirm the diagnosis. I don’t know the exact risk of glaucoma related to topical steroids but likely it is low.
This may be episcleritis which occurs during flare of intestinal IBD activity. Episcleritis, inflammation of the episclera, the layer directly beneath the conjunctiva, is the most common ocular manifestation of IBD, occurring in 2 to 5 percent of patients. If that’s the case and this happens every 3-6 months, that is an indication of suboptimal control of your crohn’s disease. That means your current medication regimen needs to be adjusted to better control the disease. This may require checking the drug level if you are on a biologic or consider switching to a biologic if you are not on one. Of course, infection needs to be ruled out but less likely due to repetitive nature.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
May 2019
Q: I was diagnosed with UC in May of 2018. I am 21 and spent 4 weeks in the hospital in August 2018 with a severe flare up. After being on Prednisone, starting Humira, etc. I have not had a period in several months. Is this normal? I am on Amatiza for constipation and I also diet(Keto). I am also experiencing a lot of anxiety from all of this. Could the medication or the diet be the reasons why I have not had a period in months?
A: During acute illness and recovery menstrual cycles can be irregular or missing. This is commonly related to functional hypothalamic amenorrhea/absence of cycle due to acute illness, weight loss or nutritional deficiencies. Sometimes resolution of acute illness, correction of nutritional deficiencies or gaining the weight do not correct the menstrual cycle irregularity. Did you lose > 10% of your body weight due to keto diet, which may be the reason for absent menstrual cycle. Pregnancy needs to be ruled out and should also look for other causes like thyroid dysfunction or celiac disease. If these are absent recommend discussing with your PCP and gyn.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
May 2019
Q: I was diagnosed with lymphocytic colitis in December. Prescribed Urceris, (budesonide 9mg) for eight weeks, then tapered to 6mg for two weeks, and now on 3mg. All symptoms have returned and my doctor said to go back to 9mg for 12 more weeks. I'm worried about so much corticosteroid usage. Is this truly safe for such a long period of time?
A: You are taking Entocort 3 mg pills, which the effective form of budesonide for microscopic colitis (lymphocytic colitis and collagenous colitis). Uceris is the formula that is mainly released in colon and it comes as 9 mg pill.
Entocort is a locally active corticosteroid that has been used in patients with microscopic colitis, a study in 2018 confirmed its efficacy compared to placebo in lymphocytic colitis. As Entocort is locally acting and its systemic side effects are less than other oral corticosteroids like prednisone. This is due to its extensive breakdown in liver resulting decrease systemic exposure. Therefore, this is the safer form steroid.
Although there is symptomatic improvement in symptoms with few days of therapy complete resolution needs at least 6- 8 weeks of Entocort 9 mg daily followed by taper over 1 month. If there is relapse of symptoms during taper, 9 mg daily treatment can be extended into 12 weeks or longer before tapering. Your treatment recommendation is the standard of care. We need to also make sure to eliminate triggers such as smoking and NSAIDs use as well as infection, celiac disease, hyperthyroidism, etc.
Even after elimination of other causes and triggers, about 10-20% of patients may not respond to Entocort. In these patients it may be necessary to use immunomodulators like azathioprine or biologics such as anti TNF agents (Infliximab, Adalilumab, etc)
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
May 2019
Q: Just diagnosed with moderate Crohn’s disease in small bowel with narrowing in terminal ileum. My main complaint is abdominal pain. The doctor wanted to put me on 40 mg of Prednisone for 2 weeks but I’m a chicken (ha) so I choose Entocort. It’s been 5 days and I still have horrible stomach pains and some back pain. Can I switch over to prednisone without problems?
A: Degree of response to medicatherapy of crohn’s stricture/narrowing depends on amount of active inflammation vs scarring/fibrosis. Current medical therapy is not effective against fibrosis but will decrease inflammation resulting in opening/decreasing the narrowing of your terminal ileum. Entocort 9 mg is usually very effective but you can try switching it to prednisone to see if you have better response. I would also recommend obtaining abdominal imaging such as CT enterography or MR enterography to better define the extent (more stricture event tight ones) and severity of small bowel disease. If it is moderate disease you will benefit from biologic therapy with or without immunomodulator to induce remission and maintain remission. Staying on low residue diet will also decrease your abdominal pain if it is related to sluggish passage of material through the narrow terminal ileum. If you have critical/severe narrowing with dilation of bowel before/proximal stricture, you may need surgical intervention in near future.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
May 2019
Q: I was diagnosed with Crohn’s in 1998 and then diagnosed with fistulizing Crohn's in 2000 after a major surgery. I started Remicade in 2001. It has kept me in remission and fistula free until last year. I recently became aware that for the past year I have been getting Inflectra, not Remicade. Could this change in medication contribute to the development of fistula? Is there any research about the changes patients have when switched from the original biologic to a biosimilar?
A: There are multiple studies showing equal efficacy of Inflectra to its originator Inflximab. More important question in your situation would be the adequacy of the drug level as well as presence of antibodies against the drug. I would recommend performing therapeutic drug monitoring to get this information if this has not been done before.
When was the last time you had colonoscopic evaluation or abdominal imaging to objectively assess the treatment response while you were still on Infliximab? If it is few years ago, it is possible you had partial controlled disease for some time (while you were on Infliximab) prior to developing the new fistula. If this is the case as mentioned before, therapeutic drug monitoring will help you to figure out what could be the best possible therapeutic change to get your disease under control again. If you have perianal fistulizing disease, MRI of rectum will better define the disease and examination under anesthesia with seton placement will facilitate the healing with correct medical therapy.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: My Crohn’s Disease onset occurred when I got pregnant in 2013. Since the diagnosis and treatments I've noticed my flares almost always coincide with my menstrual cycle. Whether small pains or complete bowl obstruction flares, trouble times are always just before or occurring with my bleeding. Is this just me or is this a known factor?
A: In general, women may experience gastrointestinal symptoms around the time of their menstrual cycle. Multiple studies have been done comparing patients with IBD to patients without IBD and all groups experienced an increase of gastrointestinal symptoms around the time of their menstrual cycle. Importantly, if you feel your symptoms are consistent with a flare, speak with your doctor to run additional tests (such as blood or stool tests) to confirm this. If confirmed, then you and your doctor can discuss modifying your therapy to account for inflammation. Consider reviewing the Crohn’s and Colitis Foundation Women and IBD Fact Sheet for additional information (https://www.crohnscolitisfoundation.org/assets/pdfs/womenfactsheet.pdf).
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: I have had resolving ulcerative colitis for several years; It is kept in check mostly through Asacol, then Lialda, and now generic mesalamine. Since switching to the generic, I have had very frequent burping, at times almost constantly. I have tried taking the medicine at a different time and with a full meal, and nothing seems to help. I know this is minor considering what some people deal with, but is there anything I can do to help with the burping?
A: Increased belching has been reported with oral mesalamine usage, so your symptoms may be related to the medication. However, if you are clinically doing well with this, then I would not recommend stopping your medications. You may consider speaking with your doctor about taking another formulation, if you did better with those. In general, excessive belching can be caused either by an increased swallowing of air with eating and drinking or may be related to underlying reflux. I would recommend seeing your gastroenterologist, who will likely take a careful history to help determine the etiology for your symptoms. Unless specific symptoms are present, you will not likely need further invasive testing, such as an endoscopy. In terms of management, this is guided by the reason for the symptoms, which may include behavioral changes (related to swallowing air), discontinuation of specific foods (for example, carbonated drinks and chewing gum) or if reflux is suspected medications directed at this. Consider reviewing the Crohn’s and Colitis Foundation Mesalamine Fact Sheet for additional information (https://www.crohnscolitisfoundation.org/assets/pdfs/aminosalicylates.pdf).
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: I have been using Remicade treatment for 5 months. I have been getting skin ulcers, or boils since beginning use of this form of treatment. These not only look nasty but are very painful. This is my third skin issue. Is this a common side effect?
A: Remicade, though very effective for the treatment of IBD, has many potential side effects, including skin side effects. Up to approximately 10% of patients, may experience some form of skin related side effects, including rashes and itching. Of the skin related issues, development of psoriasis appears to be the most common. In your case, I would recommend promptly speaking with your gastroenterologist and possibly seeing a dermatologist for further care. In mild cases of psoriasis, the Remicade is continued and topical creams are used to control the skin related side effects. In more severe cases, Remicade (and related medications) are stopped and alternative therapies are used.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: I started Azathioprine 50 mg 2x daily about 30 days ago. Last week I started experiencing stomach bloating, gas, pain between my breast and then sharp pains on left side, radiating to my back and up to my shoulder. I stopped taking the pills, called doctor and visited about pancreatitis symptoms. Is this a side effect? Should I try again? I am on Remicade every 8 weeks and the inflammation continues.
A: With azathioprine, pancreatitis is a rare, but reported side effect. This does not appear to be related to the dose of the medication, but instead an idiosyncratic occurrence. If pancreatitis was confirmed, I typically do not resume azathioprine (or 6-mercaptopurine), as the patient may have recurrent episodes. Alternatively, a growing body of studies suggests monotherapy with Remicade (and other biologic therapies) dosed adequately is as effective as combination therapy (Remicade and azathioprine). Therefore, in patients unable to take azathioprine, I typically would recommend monotherapy with a biologic, such as Remicade, and checking the drug concentration to guide dosing.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: I recently started Entyvio and realize that it will take a while for it to kick in. In the meantime, my doctor's office suggested Metamucil to help add bulk to my stool which is currently just liquid. I have always been careful to avoid too much fiber and I am concerned that the Metamucil will cause more diarrhea and not less.
A: Fiber, or said another way, dietary fiber is actually composed of 2 types of fiber, soluble and insoluble fiber. Soluble fiber, such as the psyllium found in Metamucil, dissolves completely in water and forms a gel like consistency. When ingested, this helps add bulk to stool and soften stool, so it may be recommended for both diarrhea and constipation. Insoluble fiber, which is the type of fiber found with wheat and some fruits and veggies, does not dissolve well and also adds bulk to stool, but may also have a laxative effect. When adding additional fiber to the diet, start slowly at first (perhaps ½ tablespoon initially), as some supplements may cause bloating and abdominal pain, and then increase gradually as tolerated for the desired effect. For additional information related to fiber, consider reviewing the Crohn’s and Colitis Foundation Diet and Nutrition Handout (https://www.crohnscolitisfoundation.org/assets/pdfs/diet-nutrition-2013.pdf).
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: I have Crohn’s and I just had surgery to drain an anal abscess. There was a fistula, so they placed a seton. What is the treatment for fistula? Are setons permanent? Can fistula heal with medication, like Remicade? My main concern is bowel continence.
A: Unfortunately, patients with Crohn’s disease may develop fistulizing disease around the anus, also termed peri-anal disease. This can lead to complications such as abscesses, which require prompt recognition and management. Overall, treatment of Crohn’s disease with peri-anal involvement involves close coordination between your gastroenterologist and colorectal surgeon. Once the abscess has been drained, a seton is left in place to prevent accumulation of a new abscess. In the meantime, your gastroenterologist may use a combination of therapies (including biologics and antibiotics) to gain control of the inflammation that led to formation of the fistula. Once this is controlled, the seton can be removed and your team will monitor you for improvement and closure of the fistula tract with medications. In cases where the fistula tract dose not close, then additional surgical interventions may be required, with the goal of closing the tract and preserving continence.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: Have been taking Pentasa (mezalazine) for 30 years with no problems but am now experiencing very bad light sensitivity. Even with spf 30 cream getting extreme redness, burning, tingling and swelling. Happens even indoors when in the light. Could it be my tablets causing this?
A: Skin reactions are a rarely reported side effect of mesalamine products, including Pentasa. However, since this is a rare side effect not much has been reported. In a study from the UK, nearly 3 million prescriptions of mesalamine were written and only 14 cases of skin reactions were reported. I would review with your primary care physician and gastroenterologist all your medications, in case another medication is the culprit. If no other medication causing this side effect is found, I would discuss with your gastroenterologist alternative therapies or possibly seeing a dermatologist for further recommendations. In general, patients with IBD should practice skin care and regularly use sunscreen for protection.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
March 2019
Q: I was diagnosed last year with CD. I was started on infliximab and had a handful infusions since December. I've gone thru some side effects including intense urinary pain. I've had UTI's more times than I can count. Are urinary issues a common side effect after starting treatment?
A: Urinary symptoms are not a common side effect of infliximab. Infliximab does suppress the immune system and, therefore, you would be more susceptible to infections (including urinary tract infections). However, your frequency of UTI’s since starting infliximab sounds more than what I would expect to see on infliximab. I would recommend checking with your care team to see if there is anything contributing to the frequent urinary tract infections. There may also be measures that you can take to prevent them from occurring this frequently moving forward.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
March 2019
Q: I have had Crohn’s since 2001 and have been managing it well for 6 years with infliximab. Side effects have included skin issues. Recently I got strep throat that has recurred 3 times in the last month or so, with about a week between ending the 10-day antibiotics (amoxicillin, penicillin and currently Cefdinir) and subsequent recurrences. Could the medication be wearing down my immune system? Should I talk to my doctor about switching from infliximab to another drug?
A: Infliximab does suppress the immune system and, therefore, makes you more susceptible to a variety of infections (including strep throat). This immune suppression is why infliximab works against Crohn’s disease, but infections can be a side effect. However, you also mention that your Crohn’s disease is managing well with this medication. This makes stopping infliximab a complicated and individual decision. With a switch in medicine, there is a risk of a Crohn’s flare. For that reason, when infliximab is working well, I am hesitant to recommend stopping it unless it is causing side effects that the patient can not tolerate. This is where your care team comes in to help guide you through an honest discussion of the risks and benefits of continuing on this therapy versus switching to an alternative medication. Once you have all of the information, you can decide together what would be best for your individual case.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
March 2019
Q: I was diagnosed with Crohn's disease 15 years ago. Does CD affect fertility? I was also wondering if there has there been any research done about the long term use of biologics and how they can affect fertility. I’m 32 and have been on a biologic for 12 years and can not get pregnant.
A: Thank you for this great question. There have been several studies looking at fertility in Crohn’s disease and ulcerative colitis. When Crohn’s disease is in remission (no inflammation remains), there is no sign of decreased fertility. Biologic medications have also never been associated with decreased fertility. There are studies showing a decreased birth rate in Inflammatory Bowel Disease patients. However, researchers took those studies a step further and investigated the reason for the decreased birth rate. They found that the Inflammatory Bowel Disease subjects studied more frequently did not desire a pregnancy compared with the non-IBD subjects. Once they narrowed the studies to subjects who desired pregnancy, there was no decreased fertility among all groups.
That said, there are a few individual situations that could impact fertility. If you have had surgery for Crohn’s disease, it is possible that adhesions (or scar tissue) could affect your fallopian tubes. If you have active Crohn’s inflammation, there could also be associated inflammation or scarring of the fallopian tubes. Finally, some medications (not biologics) have been associated with decreased sperm count in male patients – but that decreased fertility is not seen in female patients.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
March 2019
Q: I was recently dx with CD. I have inflammation in my ileum and also some scar tissue. I am torn about treatment. I cannot decide if I want to take the either HUMIRA, Remicade or another treatment. I worry about the side effects. My other option is laprascopic surgery to remove the diseased area. Surgeon said that I would have a good 10 years of normal eating and may not have to take the meds. I am looking for any information on how to proceed or that can help me make a treatment decision.
A: The question of medications versus surgery can be a common situation that arises. The right answer is often very individual depending on your situation. If the problem area in your ileum is mostly scar tissue, then medication may not be able to open it up enough to relieve your symptoms. In that case, surgery is the necessary intervention. However, if there is a large component of the area that is inflammation, then medication may be able to lead to a very significant improvement and prevent or delay any surgeries. Calming down inflammation prior to surgery often also allows the surgeon to limit the amount of intestine resected and improve your healing from a surgery.
While hearing the long list of possible side effects is often alarming, it is important to remember that the risk of untreated Crohn’s disease is greater than the risks of these medications. Most people tolerate the medications very well. Finally, I would say that the course after surgery can vary greatly. Remaining off therapy for 10 years is possible, but not the most common outcome. More commonly, Crohn’s disease can begin to return and require treatment at some point after surgery. Guidelines recommend repeating a colonoscopy 6-12 months after surgery to begin monitoring for return of Crohn’s disease.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
February 2019
Q: I have had chronic diarrhea for at least 20 years. I’ve had 3 colonoscopies all normal other than internal hemorrhoids, but recently had an acute bowel perforation without any new symptoms and diagnosed with Crohn's. I have not yet started medication therapy, but I am trying to limit diet. How do I know what is working when some days I have no or solid BMs and then all of a sudden urgency and loose BM? What is considered a flare? How will I know when I am in remission?
A: Thank you for your question. A bowel perforation and a new diagnosis of Crohn’s disease is a tough ordeal. By saying you are “trying to limit diet,” I imagine you mean that you are attempting to treat your Crohn’s disease by adjusting your diet. Unfortunately, no specific diets have been adequately evaluated to prevent or treat Crohn’s disease. I don’t know the exact circumstances of your case but if you were first diagnosed with Crohn’s disease after a bowel perforation, that may suggest that your disease needs to be closely monitored and possibly treated to prevent recurrence. I encourage you to speak to your gastroenterologist regarding testing that can be done to evaluate the activity of your Crohn’s disease at this point. This may include labs, imaging, and/or colonoscopy.
A flare in Crohn’s disease may be associated with diarrhea, fever, abdominal pain, and/or nausea/vomiting. These symptoms will vary depending on the location of the Crohn’s disease in your intestine and the degree of inflammation. Ideally, remission is a combination of absence of symptoms and resolution of active intestinal inflammation.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: This year will mark 10 years with ulcerative colitis. After being prescribed numerous amounts of medications with different side effects I decided to take a different approach and try things more natural. I ended up regaining control of my symptoms until recently but now I am looking into other forms of treatment other than pills. Does acupuncture help with symptoms?
A: The efficacy of alternative treatments in ulcerative colitis is a frequently asked question. Acupuncture may help patients better tolerate their ulcerative colitis symptoms, but at this point, there is no evidence that acupuncture helps decrease active intestinal inflammation. Since our goal with any treatment (i.e., remission) in ulcerative colitis is to decrease active intestinal inflammation in addition to eliminating symptoms, acupuncture on its own may not achieve the results we would like. However, if combined with other therapies that have been studied and found to cause remission in ulcerative colitis, acupuncture may be a better choice.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I’ve had Crohn’s since 2001 and have been managing it well for 6 years with Remicade. Side effects have included skin issues. Recently I got strep throat that has recurred 3 times in the last month or so, with about a week between ending the 10-day antibiotics (amoxicillin, penicillin and currently Cefdinir) and subsequent recurrences. Could the Remicade be wearing down my immune system? Should I talk to my doctor about switching from Remicade to another drug?
A: This is an interesting question. Medications such as infliximab (Remicade) are associated with a higher risk of bacterial infections like those that cause strep throat. As you suggested, this is because infliximab decreases the immune systems’ ability to fight off infections. If the diagnosis of strep throat has been made adequately on each occasion and you have been on appropriate antibiotics in each case, then it may be time to speak to your gastroenterologist about the role infliximab may be playing in the infections. At that point, your gastroenterologist can decide on the next best step for the treatment of the Crohn’s disease.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I have recently been diagnosed with Crohn’s disease involving distal ileum, few aphthous ulcers in mid and distal small bowel. Does Pentasa sachets works for Crohn’s when small bowel is involved? There are contradictory statements by doctors; some say it the slow release Pentasa works and some says it is not effective. Please clarify.
A: This is a good question. Medications like Pentasa generally are not effective for Crohn’s disease regardless of its location. The release mechanism of drugs like Pentasa seems to make little difference in its effectiveness.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I was recently diagnosed with Crohn’s Disease. My symptoms right now are severe stomach pain several times a week. My GI first prescribed budesonide but the side effects were bad so he has mentioned Remicade/Humira as another option. He is hesitating and wants to redo pill cam study before starting. Will the disease always at some point get worse if I am not on any medication?
A: Thanks for your question. Generally, the chances of your disease worsening are based on the severity of your disease at diagnosis. The severity of your disease is based on your clinical symptoms, labs, imaging, and the endoscopic evaluation. For instance, if you had mild Crohn’s disease at diagnosis, the risk of the disease progressing is lower than if you had moderate or severe Crohn’s disease at diagnosis. Your GI can help determine where you fall in the mild, moderate, and severe range. It is very reasonable to reevaluate your disease as your new GI has suggested prior to starting medications like infliximab/adalimumab (aka Remicade/Humira).
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2019
Q: I am 24 years old. I was diagnosed with crohns when I was 23. I’ve been on remicade, after my 5th infusion I had blood test done and it came back with my liver having high enzymes level. I was wondering if it’s the remicade? I hope not since I feel great being on it. I just don’t know what could cause it.
A: Remicade can cause increase in liver enzymes. However, they can also be increased from other causes: inflammation, drinking the night before the blood test was taken, other medications. If you really like how you feel on Remicade I would: a) repeat the liver enzymes b) check the Remicade level. If the liver enzymes are back to normal, which is often the case, I would proceed as prior with the infusions. If they are still elevated, the Remicade level and antibody level are helpful here, as well as maybe an ultrasound of the liver and a check for viral hepatitis.
In brief, I would do more testing before giving up on a drug you feel well on.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I was diagnosed with Ulcerative Colitis in April of 2018 and have been blessed to not really experience any flare ups. However, recently I have been experiencing some itching in the rectum area and was wondering what that could be caused from. It tends to occur in the mornings after having breakfast. I have tried eating different things for breakfast to see if anything changes but it seems to be the same. I was eating some cereal with grains and nuts and tried doing just eggs and bread.
A: Is there a fullness when you wipe? If yes, it might be hemorrhoids. Or, do you do something that might irritate hemorrhoids every morning, like sit on the toilet a long time playing on your phone? You can also see if it gets better with Preparation H. If it does not, you might need to speak to your GI about more testing such as fecal calprotectin or a sigmoidoscopy, though typically UC recurrence is blood and pain, not itching.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I was very recently diagnosed with Ulcerative Colitis. After my colonoscopy, my Dr removed some samples to do a biopsy, to test for Crohn’s as well. Is it possible to have both Ulcerative Colitis & Crohn’s?
A: No, you can either have ulcerative colitis or Crohn’s. Rarely, you can have something called IBD-U meaning IBD-undifferentiated, where we’re not sure in which category you fit yet. What your doctor meant was that he/she took small bowel biopsies during the colonoscopy and if these are positive for inflammation then it’s Crohn’s. If they are negative it’s MORE LIKELY ulcerative colitis but we can’t be fully sure. The two diseases are hard to tell apart, though as a rule of thumb you CANNOT have ulcerative colitis outside the colon.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I'm a 61-year-old woman, diagnosed with UC 30 years ago. I've been on azathioprine for about 15 years and have been relatively symptom free, though colonoscopies still show evidence of active disease. I have had few flares, and they subside quickly with a week or so of cortisone enemas. Recently I had a sinus infection that failed to clear after two rounds of antibiotics, and I'm now on a third, which gave me wicked diarrhea and triggered a flare. Should I worry about being on aza?
A: Yes, you should worry. I would worry about a) the long-term exposure to AZA and the associated lymphoma risk b) the long-term history of incompletely treated ulcerative colitis and the associated colon cancer risk and c) the possibility that this “wicked diarrhea” is either a flare of Clostridium difficile (C diff) infection.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I have had UC for 10 years now, very mild. Went to my endocrinologists appt recently for my 6-month checkup and my liver enzymes are high. Could my Delzicol contribute to this? I have no other symptoms what so ever.
A: Abnormal liver enzymes rarely are “felt” in any way by the patient. That being said, mesalamines can very rarely (3.2 cases/1 million prescriptions, according to an NIH websity named livertox.org) cause liver abnormalities. Why are you seeing an endocrinologist? It’s more likely that either the endocrine condition you have (i.e diabetes) or the treatment for it (i.e hyperlipidemia, statin medications) has caused these liver enzymes.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: When taking 9 mg a day of Budesonide ER for 8 weeks. Do you need to taper off them the same way you would taper off prednisone and if so, how?
A: I taper my patients to 6mg/d for 1-2 weeks then 3 mg/d for 1-2 weeks, then off. I think it can be done even faster and even stopped completely, esp if there was no response in the first place. We taper prednisone because of concern for adrenal insufficiency but that is unlikely with budesonide.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: After 50 years of medically managed Crohns, I had surgery in September for a 10" resection, followed by leakage at the repair and two infection abscesses requiring drains. After 5 weeks in the hospital, I am now 10 weeks out from surgery and recovering VERY slowly. I have little appetite and am losing weight daily, with very low energy and fatigue. I need to know if this is "normal" recovery for a 78-year-old, formerly very active in good health or could it be another problem?
A: I think we should investigate a bit. The persistent weight loss is not typical and I would get a CT to make sure the abscesses are fully gone and maybe even scope you (provided the surgical site is accessible with a scope) to make sure the Crohn’s isn’t recurring instead.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I have been diagnosed with Lymphocytic colitis. I was taking Budesonide but was taken off when diagnosed with breast cancer. I have been given apriso and Questran instead, but I read that one of the side effects was diarrhea. What are other treatment options?
A: I am not sure why you couldn’t stay on budesonide with breast cancer.
That being said, Apriso and Questran typically treat diarrhea, don’t cause it.
It’s true that mesalamines, which Apriso belongs to, can cause diarrhea in a minority of patients, but generally most patients improve on it. You can also try Imodium.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
December 2018
Q: How common is pyoderma gangrenosum in a patient diagnosed with Crohn’s disease? Does lesion ever completely heal with topical medication?
A: Pyoderma gangrenosum is one of the skin manifestations that can be seen in up to 5% of patients with Crohn’s disease. The other main skin manifestation that can be seen is erythema nodosum, painful reddish nodules on the lower legs without actual ulceration or skin breakage. Antibiotics, injections of medications into the ulcers, and topical ointments all may be used as treatments and have good response. Some medications used to treat the underlying Crohn’s can help with the pyoderma.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was diagnosed with Multiple Sclerosis (M.S). 15 years ago. I just spent 4 days in the hospital and diagnosed with UC on top of the M.S. Are the two disease related in any way?
A: Crohn’s and ulcerative colitis are considered “immune-mediated.” The same is true with M.S. With that, there is a medication that is approved for treating moderate to severe Crohn’s disease and M.S., which is natalizumab (Tysabri). This is not approved for ulcerative colitis, although it’s sister drug, vedolizumab (Entyvio) is approved for both Crohn’s and ulcerative colitis.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was recently diagnosed with a mild case of ulcerative proctitis and am having trouble finding any information about this condition. I'm frequently redirected to ulcerative colitis (which my GI has specifically said I do not have). Are the conditions different? Can you recommend any materials I can use to educate myself on my condition?
A: Ulcerative colitis comes in different forms. About 30% of patients will present with inflammation extending beyond the rectum. Some patients have ulcerative colitis of just the rectum, or last 10cm of the colon. This “proctitis” is a part of ulcerative colitis and is treated similarly like the rest of ulcerative colitis. Some patients with just proctitis can stay in remission with topical agents like mesalamine suppositories (Canasa), but others need systemic therapies with mesalamine oral products or even biologic therapy.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was diagnosed with Crohn's and Prostate Cancer within a month of each other. My Crohn's has been in "flare up" status for well over a year. My GI doesn't want to treat Crohn's until my prostate cancer has been treated because he feels that the biologics/immunosuppressants would make the cancer grow faster. However, my oncologists have indicated that they treat both conditions with Humira. Any evidence to support either opinion?
A: Although we would not use a medication like Humira to treat any form of cancer, we know that this class of medication can increase risk of specific types of cancers. The main types are melanoma and lymphoma. Humira and similar medications have not been associated with solid tumor risk like prostate, breast, and lung cancer. It should be safe to consider continuing Humira in this situation to keep the Crohn’s in remission. Another option would be to try a more specific medication like vedolizumab (Entyvio).
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was diagnosed with Crohn's (terminal ileitis) in 1990. I have done relatively well after adjusting diet - mostly vegetarian. Meds are Pentasa (1500 mg daily) in recent years with the prednisone at times of flareup (obstruction) ~4 times annually. Recent colonoscopy showed stricture at the ileocecal valve. My (new) Gastro specialist has recommended surgery to remove the problem section of the ileum. Is this a common procedure - what is the typical recovery times and likely meds afterward?
A: Surgery is sometimes needed in the management of Crohn’s complications, including strictures. If the stricture looks more like scar tissue (fibrostenotic) from colonoscopy and MR or CT imaging, then surgical resection is reasonable. If the stricture is short (less than 3cm) then consider balloon dilation with an experienced gastroenterologist during colonoscopy.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I am 73 years old. I was diagnosed with Crohn's in 1998 and the doctor first put me on Pentasa, which works great, in fact, it put me in remission for years. However, about a year ago, the bleeding started again and so the doctor put me on Humira, which works at first but came back, then prednisone, came back, back on Humira, came back. Now the doctor wants to put me on Entyvio. I am very scared as the side effects is too much for me to bear. What are the risk of this medication?
A: All medications used to treat Crohn’s have potential side effects. We have to measure these side effects and compare them with the risk of untreated or undertreated Crohn’s. Potential complications from Crohn’s include stricture formation, fistulas (abnormal connections from the bowel to bowel , skin or other organs) and abscess formation. The risks of Entyvio are actually potentially slightly lower than Humira, given its more gut-specific mechanism.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
November 2018
Q: I have been in a flare for the last 8 months in which I have basically experienced nothing but diarrhea every single day. Recently, I have experienced more instances of formed stools. I feel that my rectum is “out of shape” and lacks the strength to pass some of these more formed stools. I fear this could lead to constipation. Is there anything that I can do to aide in the passing of these more formed stools?
A: Even without IBD, people can suffer with poorly formed BMs, which usually has nothing to do with the shape of your colon or the strength of the colon wall. We often try fiber supplements for this. However, if you have Crohn’s or ulcerative colitis, this is a disease that can affect the rectum. Inflammation in the rectum is the most important thing to ensure that you have more formed stools. So, the answer to your question is likely that you need to work with your doctors to best control your IBD inflammation.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2018
Q: I have had Crohn's since 2003 and over the past several years I have had periods of random swelling on my feet and hands not the whole foot or hand. The size is anywhere from a marble size to golf ball size. Can this swelling be associated with Crohn’s.
A: There are extraintestinal manifestations in the skin (as well as the joints and eyes) which are related to Crohn’s disease but separate from the bowels. However, I am not sure about the random episodes of varying sizes. Nothing specific to IBD or your IBD meds comes to mind, so I recommend you follow up with your gastroenterologist.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2018
Q: After 20 years with UC, I had a total colectomy 5 years ago. I was recently diagnosed with Episcleritis. Is it common for autoimmune symptoms to occur in other organs, even after a colectomy?
A: Yes, you are at risk for other autoiummune disease in association with IBD, even if you don’t suffer from IBD any more. This is essentially what a rheumatologist does. The good news is hopefully episcleritis is easier to treat than UC and hopefully a rare occurrence for you.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2018
Q: My daughter has had Crohns disease for almost 20 years. She has been having extreme bloating after meals no matter what she eats. She can look almost 7-8 month pregnant. What can we do?
A: Bloating can be a common symptom and it can happen for various reasons. We most commonly see bloating in patients with irritable bowel syndrome (IBS). The website can help you learn more about IBS, as we see IBS in a lot of our Crohn’s and colitis symptoms. These are essentially symptoms that may occur in the absence of actual Crohn’s inflammation.
However, If she has a stricture (or narrowing) from having Crohn’s disease, sometimes certain foods, such as fibrous foods/roughage can cause bloating. With strictures—sometimes treatments are possible without the need for surgery. I would recommend follow up with your GI doctor to see if any further testing or treatments are needed.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2018
Q: I have been taking Humira for 7 years with great response and no side effects. Recently I have had episodes of extreme fatigue with weak feeling and a shaky feeling the day after injection. My doctor ran a series of blood work which indicate a possible drug induced lupus. I have absolutely no other symptoms such as joint pain and such. I also take Synthroid 25 mcg and have for years. This level is checked every 6 months. Would switching to another medication end the lupus side effects?
A: It’s hard to know what you exactly had. Sometimes, people can have injection site reactions (the newer humira pens may be better for you), while others can be due to antibodies to humira (which you then need to switch off humira). It depends on what tests your doctors have checked, but if this has been deemed a lupus-like reaction to Humira, then you may have switch to a different therapy. The good news, however, is that you responded well to humira, then we now have lot of choices for you that you will likely also respond well.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2018
Q: Does Stelara have less cancer potential than other biological as a treatment for Crohns?
A: Keep in mind that people with IBD are at increased risk for cancers, esp if their disease is not under control, so it’s often difficult to know based on the clinical trials whether a person got cancer because they were at higher risk for getting cancer vs whether the actual drug caused cancer. As a whole, we have data on all of the biologics, and none of them have been associated with increased cancers. This includes stelara, where we have not seen any increased risks of cancer.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2018
Q: I was diagnosed 6 yrs ago with UC. It was a mild case. I took Lialda/Mesalamine, and it did the trick. I stopped taking it 6 months ago. A month ago, I had a mild flare up. My doctor wants to put me on Prednisone to bring down inflammation. I do not think my symptoms are bad enough for a steroid. If I take nothing, will the inflammation go down on its own? Is there a natural way to bring down the inflammation? Ginseng or Tumeric perhaps?
A: You probably don’t need prednisone if the flare is mild. We usually give people prednisone to make them feel better and to shorten time of suffering. Similarly, I think that mesalamine is a very good drug for mild disease. Tumeric has been studied as well, but I think that mesalamine is more effective. You can also probably tough this out, but you run the risk of it getting worse. Plus, you are almost guaranteed to extend your period of suffering. Don’t suffer. Take the mesalamine.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
October 2018
Q: My daughter was diagnosed with UC in December 2017. She is currently taking Apriso and ProctoFoam. Her symptoms have decreased at times, but not always and she is currently experiencing diarrhea, abdominal pain, and fatigue. I have heard from some people mention Tumeric for fighting inflammation throughout the body. What are your thoughts on Turmeric for UC patients?
A: Anytime a patient is interested in adding an herbal supplement or botanical, discuss with your medical team.
Tumeric is derived from the rhizome of a plant from the ginger family. It has been used in Asia to season food. It has a bright yellow color. Curcumin is a compound found in turmeric and it has been touted for its anti-inflammatory effects. There are some studies that indicate mucosal healing with the addition of turmeric/curcumin to medications.
Turmeric in amounts that have been tested are generally safe when taken orally. High doses may cause GI symptoms. Check the commercial products for any additional ingredients.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
October 2018
Q: I have Crohn's disease and have read about the benefits of drinking celery juice first thing in the morning on an empty stomach. Do you recommend trying it? Also can juicing fruits and veggies (as opposed to eating them) be a good way to get the nutrients they provide?
A: I have not read any evidence-based journal articles about celery juice. I cannot recommend celery juice.
Juicing fruits and vegetables is popular. Juicing is not any healthier than eating whole fruits and vegetables. If you prefer to juice, consider making smoothies by adding yogurt to the homemade juice.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
October 2018
Q: I’m trying to learn more out about diet for my Crohn’s Disease. I know it says to stay away from sugars but are there any sugars allowed? Like regular sugar just not processed?
A: No one diet has been scientifically proven to manage Crohn’s disease. Some patients are interested in carbohydrate restriction like the specific carbohydrate diet, gluten-free diet, and FOD Map diet. Some patients have seen reduction in GI symptoms when they modify their diets. Always discuss with your medical team.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
September 2018
Q: My daughter was diagnosed with UC 20 years ago. After trying many meds she finally was able to get into remission using Remicade every 2 months. She has been doing these infusions for 10 years with no flares. She is now considering getting pregnant. Can she continue to use Remicade during pregnancy? Can she also breastfeeding?
A: Great question – absolutely, we recommend continuing with the infusions throughout all three trimesters of pregnancy as the priority is to keep your daughter (the mother) in the best health possible to insure a safe and health pregnancy. Infliximab, and all the anti-TNFs, are safe to continue throughout pregnancy and safe to use during breastfeed as very little is passed into the breastmilk. Because these agents are proteins, any tiny amount ingested by the baby will likely be degraded by digestive enzymes. While most of the agents cross the placenta and can be present in the baby’s bloodstream at birth, there have so far been no increased safety signals in terms of infections, developmental delays, or growth retardation. We know this thanks to the PIANO registry, a multicenter prospective pregnancy outcomes registry run by Dr. Uma Mahadevan of UCSF and funded through the Crohn’s and Colitis Foundation. It’s important to discuss family planning with your provider and a high-risk obstetrician familiar with IBD.
Moderated Note Added: To learn more about the PIANO Registry email info@crohnscolitisfoundation.org or view program transcript at: http://www.slideshare.net/CrohnsColitis/facebook-chat-120-pregnancy-in-ibd-and-neonatal-outcomes
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: I was diagnosed with granulomatous colitis (Crohn's Disease) in September of 2016. I’m 19 years old and on Humira and Lialda and in remission for about 11 months. I wanted to ask about what life expectancy I can expect with my type of Crohn's disease? Additionally, how can I do my best to prevent and mitigate the risk of getting GI related or skin cancer as well as complications such as strictures, abscesses, blockages, scarring, fistulas, etc.?
A: Thanks for the question, first, wonderful news that you are in remission! The key, though, is to find out what type of remission you are in as our goal is for your Crohn’s disease to be in “deep remission” which means that your repeat colonoscopy shows complete healing with no active inflammation on biopsies. It’s important to have that relook to make sure your colon has healed as ongoing inflammation, even at the tissue level, can be associated with an increased risk of colon cancer. In terms of life expectancy, your Crohn’s disease diagnosis – especially if well controlled, should NOT impact your overall life expectancy. We do recommend that you maintain a healthy diet, follow preventative care recommendations, and see your primary care provider, gynecologist, and gastroenterologist routinely for scheduled visits, wear sunblock, get your skin exams for skin cancers, and stay on top of your vaccinations – flu, pneumonia, and HPV are the ones we would recommend for you. The most important preventative measure you can take is to keep your Crohn’s disease well controlled – the medications that got you into remission are the one you should likely stay on. Mesalamine (such as Lialda) is controversial for Crohn’s disease – you may or may not need to stay on that in the future, but I would recommend you discuss with your provider.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: Are there any medical risk or downside of doing an endoscopy and colonoscopy at the same time?
A: There is no such thing as a “risk-free” procedure, however, routine diagnostic endoscopy and colonoscopy are relatively low risk in the scope (pun intended ) of procedures gastroenterologists perform. If your provider recommends getting both procedures for a clinically appropriate indication, then getting both at the same time avoids another round of sedation in the future. An upper endoscopy does not require any bowel prep and typically only adds 10-15 minutes more of procedure time. We routinely perform both procedures together if warranted.
Moderator Note added: To learn more about diagnostic test download the brochure Diagnosing and Monitoring IBD http://www.crohnscolitisfoundation.org/assets/pdfs/diagnosing-monitoring-ibd-brochure-final-rev062518.pdf
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: I have CD for 15 yrs. and have had 4 resections. I have a protrusion that sticks out in my stomach area. My doctor says it is not a hernia. What tests are needed to find out what is going on? Is a protrusion in the stomach area a common experience with CD?
A: The most common cause would be a hernia from a prior incision site, but that’s usually evident on physical exam particularly if it bulges out as you move from laying down on your back to sitting, for example. Most hernias don’t require intervention, they also may or may not be seen on imaging studies depending on size and location. If it’s not a hernia, then I would ask your provider about other possibilities. Concerning features would be increasing size, pain, warmth to touch, redness, fixed position – not mobile.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: I was diagnosed with UC in 2001 and started on Remicade. I am currently on Entyvio. Two years ago I had a routine colonoscopy and biopsies that showed low grade dysplasia. The dr. was able to successfully remove the dysplasia during another colonoscopy under anesthesia. I had another colonoscopy and I can say that I am in remission. No signs of any UC inflammation. However, biopsies again showed signs of low grade dysplasia. What other treatment alternatives are available?
A: There is no “treatment” for dysplasia, per se. The goal is to try to remove the dysplasia if identified. Risk factors for dysplasia are extent of UC (does it involve more than just the rectum), duration of UC diagnosis (we often recommend surveillance colonoscopies to try to detect dysplasia after 8+ years of diagnosis or sooner if there are higher risk factors such as family history or a liver condition such as primary sclerosing cholangitis or personal history of dysplasia), ongoing inflammation and increasing age. The good news is that your UC is well-controlled. However, you have scopes that show dysplasia – the priority is to try to insure we see and remove the dysplasia as best as possible. I would discuss with your provider using an enhanced imaging technique such as chromoendoscopy to try to identify areas of dysplasia and fully remove them if possible. Sometimes, interventional endoscopists are needed to help with these procedures.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
July 2018
Q: I was diagnosed with UC about a year ago after suffering from constant diarrhea, nighttime urgency, and abdominal pain for the year prior. Since my diagnosis I have been consistently taking Mesalamine and 6-MP, and my symptoms have mostly subsided, but I still have not had any signs of solid stools. Is this all I can hope for in remission, or should I consider changing medications?
A: I am happy to hear that you are clinically feeling better. The real question is if you have achieved objective remission. To assess this we use blood levels for inflammation (CRP), stool studies (fecal calprotectin) and/or repeat colonoscopy. If you have signs of objective remission or mucosal healing and still have ongoing loose stools, your provider can address other causes for diarrhea. If you have objective evidence of ongoing disease activity then this might be the cause of your loose stools, they would want to consider why you have not had a complete response to therapy (mesalamine and 6MP). There are 2 likely explanations: you are on suboptimal dosing (you need more drug) or your disease is not going to response to these types of therapy and achieve complete remission. Next steps: find out if you have ongoing disease activity and work with your provider if you do to determine why. We can often check levels of 6-MP and find out if you are on enough therapy.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2018
Q: I have Crohn's Disease of the large intestines without complications. My question is my G.I. doctor wants me to have a colonoscopy every year. Is this necessary to do annually?
A: The guidelines recommend that patients that have at least 1/3 of their colon involved with disease (in your case Crohn’s colitis) should undergo surveillance colonoscopy every 1-3 years starting 8 years after disease. We base the frequency of surveillance on several factors, if your disease has been well controlled and you have histologic healing (biopsies without disease activity), no family history or personal history of precancerous changes (dysplasia) and no other risk factors for dysplasia, we might consider spacing out your interval. You can read about the recommendations in the SCENIC consensus statement or the ASGE guidelines for colon cancer surveillance in IBD patients.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2018
Q: I am having a period about every 2 weeks since being diagnosed in May. I just finished a two month treatment of budesonide (steroid). Is this typical or should I consult with my OB/GYN? I am 48 so I often get a response that I am perimenopausal.
A: Patients with active Crohn’s disease or ulcerative colitis can have variations in their menstrual patterns. So it is not uncommon to see irregular menses or absence of menses until the body is healing (improved inflammation). However whenever there is a change in vaginal bleeding, I would recommend that you consult with your gynecologist to ensure that no further work-up is needed at this time.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2018
Q: Can Crohn's disease effect my teeth?
A: The easy answer is yes, without knowing what effects you might be having. Crohn’s disease can lead to malabsorption of important vitamins and minerals that can be important for overall health and can impact your teeth as well.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2018
Q: What happens if you have a positive TB blood test during treatment with a biologic?
A: Current recommendations would be to have close follow-up evaluation including chest imaging and referral to see infectious disease specialist. Your provider will likely notify you to hold your biologic therapy until confirmation testing is completed.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
June 2018
Q: I was diagnosed with Crohn's over a month ago and have drastically adjusted my diet along with the medication. My biggest heartbreak is coffee. Do people find it problematic to drink it (only one cup a day) while in remission without it contributing to a new flare up or is it best to be remove it from my diet forever?
A: There is no clear research on coffee/caffeine and IBD. I am usually okay with most of my patients having a cup of coffee (or two) a day. That said, there are usually a few things that I clarify about coffee/caffeine beforehand:
1) Caffeine stimulates the bowels, so if you have urgency and/or diarrhea, which usually accompany a flare, I would avoid. It’s just basically fueling the fire and not helping the symptoms.
2) Coffee is not all created equal. A lot of the negative health associations with coffee are more related to what you put into the coffee – sugars, artificial sweeteners, fat, etc. So, a little bit of milk, lactose free milk, or milk alternative is the better choice. And remember, 1 cup equals 8 ounces (portion control).
3) Coffee/caffeine can exacerbate stress, anxiety, and alter sleep. So, if you are experiencing any of these issues, I would decrease or avoid.
ANSWERED BY:
Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
Founder of Alanna Cabrero Nutrition
June 2018
Q: I’m wondering what oils my daughter can have. She has been diagnosed with ulcerative colitis. I know olive oil is good but vegetable oil is not. What about cotton seed oil, soy bean oil? Palm oil, sunflower oil and hydrogenated vegetable oil? Any help would be greatly appreciated.
A: • Flaxseed oil is a great option for drizzling and salads. It’s high in plant-based omega-3 fatty acids, but you can’t cook with it, because it oxidizes quickly.
• Extra virgin olive oil is my favorite and a great choice for low-smoking points, so usually okay for drizzling, salads, and light sautéing. It has high amounts of anti-inflammatory monounsaturated fats that are also easier to digest/break down.
• Avocado oil is packed in heart-healthy monounsaturated fats, but unlike olive oil can be used at a higher smoking point (about 375 to 400F). It has a neutral flavor, and has been less chemically processed than canola or other vegetable oils.
• Cold-pressed safflower or sunflower oil is low in saturated fats and high in omega-9 fatty acids. They both have higher smoking points (about 475 to 510F), so can be used frying (in moderation) and sautéing.
• As far as soy bean oil, it’s a great source of polyunsaturated fatty acids as well as vitamin E, but much like other vegetable-based oils, I would choose cold-pressed or expeller-pressed oil. Ideally choosing organic and/or non-GMO varieties and always avoid the words hydrogenated or partially hydrogenated, which usually imply presence of trans fats, which we want to avoid. It also has a higher smoking point at 450F.
ANSWERED BY:
Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
Founder of Alanna Cabrero Nutrition
June 2018
Q: I was recently diagnosed with a mild case of Crohn's ileitis. I was wondering what diet and lifestyle changes I should make to accommodate to my disease?
A: 1) Eat a cleaner diet. Try to choose whole foods and whole ingredients. Reduce/avoid processed, packaged, artificial, dyed, and fast food. This naturally forces you to cook a little more and have a better general awareness of food. I usually do suggest to try and choose local/organic options, especially when it comes to animal products and use the Dirty Dozen/ Clean 15 for all produce, which will help reduce pesticide exposure.
2) Avoid foods that exacerbate symptoms. It can help to keep a food/symptom diary. Some common triggers are:
a. Alcohol and/ or caffeine (stimulants)
b. Dairy products, usually high in lactose such as milk, ice-cream, creamy sauces
c. Fried or high-fat foods, such as fried foods, red meats, processed meats, pastries
d. Large quantities of roughage, such as salads, beans, whole nuts/seeds. Too much fiber, especially during a flare, usually exacerbates symptoms.
e. Refined sugars and flours. Some patients are sensitive to high amounts of gluten, such as bagels, pastas, cookies, etc
f. Additives and preservatives such as MSG, antibiotics, emulsifiers, artificial sweeteners, and coloring agents
3) Instead of altogether avoiding foods, try to change the quality and/or texture of the food. For instance, patients during a flare may not be able to have a salad, but you may be able to include a little spinach in a smoothie, add yam and squash to a chicken soup, or have soft/skinless fruit such as bananas, cantaloupe, or papaya as a snack. Cooked, blended, stewed, ground, and pureed food are can be easier to digest.
4) Focus on how you eat as much as what you eat. Chewing your food, slowing down, eating mindfully, and avoiding overeating are as important. This aids the digestive process and essentially creates a better relationship with food.
5) Find something that helps you relax and find your happy place, it can be meeting with a friend, finding a support group, meditation or Yoga. Stress mgt is a key part of your overall healing.
ANSWERED BY:
Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
Founder of Alanna Cabrero Nutrition
February 2018
Q: Our 9-yr old was diagnosed with Crohn's 8 weeks ago, and is on Remicade. He is on a mostly liquid diet. Because the protein drinks are coming 3 times/day, he started fighting us and not wanting to drink them. Each and every bottle is a battle that has just worn us down emotionally. We're at our wits and creativity end trying to find ways for him to take them. We've tried Special-K chocolate, Ensure Clear, and Carnation Breakfast. This is so very, draining. Any advice is much appreciated.
A: Having a child with medical issues can create many obstacles that sometimes we just need help to navigate. Communication with your son’s gastroenterologist or pediatrician is a great place to start. Discuss your concerns, what you have tried and how this is impacting the family. They will likely be able to provide some suggestions or direct you to a specialist who can help. To address the dietary aspects, ask if there is a pediatric dietitian who specializes in IBD or feeding issues. This person may be able to create a tailored diet plan taking into consideration your child’s age, diagnosis, medication, and medical recommendations. Also, a child psychologist would be a wonderful addition to your child’s team! Perhaps there are some emotions that your son is having a difficult time processing which impacts other aspects of his life (i.e. eating). The child psychologist can aid your child in working through the various aspects of having IBD in a developmentally appropriate way. The psychologist can also work with the family to aid with implementing strategies to make things less challenging at home.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
February 2018
Q: I was in remission for about 8 months. Recently I had a flare and my doctor wants me to go on Imuran. I have been to the point of having a mental and nervous breakdown over this due to my fear of the cancer side effects. The 2 specialists I saw say to weigh the risks and I know the risks of the flare, however, I literally cannot function or enjoy life at the prospect of taking a medicine that could kill me. This is dramatic but I haven’t been able to cope with this and need help.
A: Taking a new medication, especially one with scary, possible side effects, can be anxiety provoking. Fears related to the unknowns and uncontrollable aspects of the medication can drive that anxiety as well. If you are feeling debilitated by the anxiety and worry over this medication, seeking the support and guidance of a psychologist can be very appropriate and helpful. Look for a mental health provider who specializes in gastrointestinal disorders, chronic health issues and/or anxiety. A provider who specializes in the use of Cognitive Behavioral Therapy (CBT), a type of therapy very commonly used in medical settings and to treat anxiety. CBT is used to address your worrisome thoughts and provide you with tools to better manage them. Mental health care when managing a chronic disease, like IBD, is often just as important as your medical care. Your therapist can aid you in developing tools to better manage stress and adaptively cope with worry and fear. When you feel better about your self-management skills, you can regain focus on the enjoyable aspects of your life.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
February 2018
Q: My mom thinks I am researching and educating myself on Crohn's because I want attention, wants to lay down and be a "bum" all my life and want pain meds and thinks I'm making up the pain and the whole diagnosis. Says she knows people who have it and are never in pain so I must just want a fix and thinks I'm making myself sick (throwing up and diarrhea) She's causing me more stress and depression. What can I do to inform her better or something?
A: Sometimes having IBD can feel as though you have an invisible illness. That can make it hard for family and friends to truly understand all the ways in which IBD impacts your life. There is a great deal of education that is required to successfully navigate IBD. Asking your loved one to learn with you can be a good starting place. Also, consider outside resources for support, such as friends, the IBD community, and a mental health professional.
Here are a couple suggestions to aid with building a support network:
• Invite your family member to an appointment with your gastroenterologist. Ask your provider to discuss the disease, impacts on the family, treatment and potential side effects of treatment.
• Ask your loved one to read this document about being diagnosed and managing IBD: http://www.crohnscolitisfoundation.org/assets/pdfs/newly-diagnosed.pdf
• Invite your family member to a Crohn’s and Colitis Foundation patient education event in your area.
• Join an IBD support group to talk with other people who have IBD and have had similar experiences with family and friends.
• Invite your family member to sit with you and watch IBD School videos from IBD experts at the University of Michigan: http://www.med.umich.edu/ibd/school/index.html
• Communicate how it makes you feel when your loved one doesn’t take your disease seriously. Let them know how they can best support you.
• Consider establishing care with a mental health professional who works with people with chronic illness to learn skills to manage the many complexities of IBD.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
February 2018
Q: My 14 year old daughter is on 6mp and her liver enzyme level is 116. The doctor said that was high but nothing needs to be done about it. Could you shed some light on why nothing needs to be done about a high level?
A: Liver enzyme levels can be elevated for any number of reasons including: medications such as 6-MP, infection, IBD-associated liver disease and other medical conditions. A transient or mild elevation in a liver enzyme test is not typically a cause for concern, but means that the tests should be repeated to ensure that the levels have returned to normal and are not increasing. If the liver enzymes remain elevated additional blood tests and/or imaging of the liver may be warranted. It may also be useful to have the 6-MP level checked to make sure that the blood levels are in the target range.
ANSWERED BY:
Stacy A. Kahn, MD
Attending Physician Boston Children's Hospital
Attending Physician Boston Children's Hospital
January 2018
Q: I am switching to Humira from Remicade due to infusion reaction. What dose and timing of oral prednisone do you recommend to prevent reaction to Humira?
A: That’s an interesting question. With infliximab (Remicade), some providers use steroids (like prednisone) before the infusion with the thought that it prevents infusion reactions. For adalimumab (Humira), I have found that using allergy drugs like diphenhydramine (Benadryl) can be effective in preventing injection site reactions. I have not use steroids with adalimumab in the past to prevent injection site reactions.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I have ulcerative colitis. I have lost about 20 lbs in the last two months. Is that normal amount of weight loss?
A: I would need more information on this situation to be able to answer this question adequately.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I am 22 years old and have had Crohn's and ulcerative colitis since I was 5 years old. I just got over a bad flare up and a recent scope shows inflammation is almost gone. However, I have constant pain in the right side of lower abdomen that will not go away. The pain is interfering with daily activities. I have been in and out of the hospital and seen my doctor numerous times and no one seems to figure out how to decrease this pain. Any tips of how to deal with the pain?
A: This is a common scenario and I am glad that you brought it up. We know that there is a group of patients with Crohn’s or ulcerative colitis who have ongoing pain without evidence of active intestinal inflammation. The pain can be due to multiple causes including small bowel bacterial overgrowth, musculoskeletal pain, irritable bowel syndrome, etc. It’s important to work with your gastroenterologist to determine the cause of the pain so it can be adequately managed.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I have had Crohn's for about 15 years. I recently found out about the MTHFR (C677T) mutation that sounds like it has some relation to IBD. What information can you tell me about this mutation?
A: This mutation may have some relation to the development of IBD. It may place a patient at higher risk for clotting and it is associated with other disease processes so it is not specific for IBD. There have been over 200 different gene mutations found that are associated with IBD. The reality is that most patients do not have any of these mutations because IBD involves a complex interplay between organisms in the gut, environment factors like smoking, and an overactive immune system.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: My 21-year old son is on 6mp for several years with good success. He developed hives a week ago that have not gone away. He woke up with swollen hands and feet with welts around the areas. Hives have been seen on upper arms, back, knees, and they come and go. We're seeing an allergist next week. There are warnings to seek medical professional right away if hives and rashes show. He also has a cough and sore throat. Why the warning on meds and could he be allergic to 6MP now?
A: Thanks for your question. Several medications can cause hives. However, it would be unusual that your son having being on 6-MP for several years would then go on to develop hives. It was completely appropriate to seek out a health care professional for the symptoms, but since there are multiple causes of hives besides medication, it may be best to await the work-up before attributing the symptoms to 6-MP.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I was diagnosed with CD in 2014 at age 60. I have been on Pentasa and did ok. I had a flare in mid-2017 and was changed to budesonide after colonoscopy showed moderate inflammation and small ulcers. The budesonide has not helped and now my Gastroenterologist wants to start Imuran or Remicade. I have read about both and wonder which is really better for CD. I can't find any clinical trial data/studies on Imuran in CD and am concerned about its use in CD. Which drug is the better choice?
A: This is a great question. When it’s time to advance medical therapy to medications like azathioprine (Imuran) and infliximab (Remicade), there are multiple considerations. There is data that both medications are effective in CD. The better choice is going to depend on the specific patient. Azathioprine takes 2-3 months to generally kick in and is an oral medication taken daily while infliximab can kick in after 2-4 weeks but is given as an IV in set intervals. It will be best to discuss the best choice with your gastroenterologist.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I am a 20 year old male who was diagnosed with ulcerative colitis in 2014. I am taking Asacol HD (600mg) with my Azathioprine daily. The Azathioprine is working very well for me and I haven't had a flare up since I started 2 months ago. However I have been told that this drug can increase the chance of cancer. I wanted to ask what percentage of people taking this medication actually get cancer and of what age group? Should I be worried about taking this medication?
A: This is a very common question. The two most common types of cancer associated with azathioprine are: 1) nonmelanoma skin cancer, and 2) non-Hodgkin’s lymphoma. The risk of skin cancer is about twice that of those individuals with ulcerative colitis who are not on azathioprine. This risk goes away once the medication is no longer being used. Non-Hodgkin’s lymphoma is much less common, and is about four times as likely with azathioprine than without it. However, this risk still equates to about 1 in 1000 after years of taking the medication. Again, once the medication is no longer used, the risk appears to go away. For both types of cancers, older patients (>60 years old) have the highest risk.
Having said this, we also have to weigh the risks of any medications against the risks of having uncontrolled ulcerative colitis like surgery and colon cancer. I’m glad to hear your disease is under control.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
December 2017
Q: My adult daughter was diagnosed with CD in 2013 and started Remicade in 2015. For the past 6 infusions she has had an allergic reaction during the infusion. She is given a steroid than the infusion starts again with no problems. She isn't presently having any flare-up symptoms. Does this mean she should stop Remicade? She is also on methotrexate, but has no relief for RA symptoms, which are getting worse. Do you have any suggestions on meds for both Crohn’s and RA?
A: Allergic reactions can occur during the Remicade infusions. Because your daughter has required steroids during the last several infusions, she may want to try pre-treatment with a dose of an anti-histamine, such as Benadryl, and a dose of steroids before the infusion in order to prevent a reaction. Slowing the infusion rate sometimes can also be helpful.
Methotrexate is often useful for both Crohn’s and arthritis. Your daughter may want to discuss whether the current dose of methotrexate can be adjusted to better control her joint pains. Alternatively, her doctor may want to do some testing to make sure that her intestines are healed, because ongoing intestinal inflammation can also be a cause of ongoing joint pains. Alternatively, her doctor may want to do some testing to make sure that her intestines are healed, because ongoing intestinal inflammation can also be a cause of ongoing joint pains.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: I am on Remicade and MTX. The side effects are very hard to live with. I feel tired, often dizzy, run down, and weak. I take the MTX on Sunday night via injection. If I was not semi-retired, I would be in trouble because I could not work Monday or Tuesday each week. Is there a point where the healing is sufficient that I can get off this stuff? Is there healing going on at all? My quality of life was better when I was going to the bathroom all the time
A: If you think that the symptoms of fatigue, dizziness, and weakness may be due to the methotrexate, I recommend discussing possibly stopping the medication with your doctor. Methotrexate is often used to prevent antibody formation to Remicade, and your doctor can advise you whether you may be able to try Remicade on its own, or possibly with an immunosuppressant from a different class of medications that may not cause the same problems for you.
However, you also make a very good point that it is important to find out if your intestine is healing on your current medication regimen. Some of your symptoms, such as fatigue, could also be caused by ongoing inflammation. Your doctor may do testing include a stool test for calprotecin (a marker of inflammation), a colonoscopy, or a MRI or CT scan to help determine if the intestine has healed.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: My husband with Crohn's is moving to Humira or another biologic. The problem is he keeps running into issues with the TB blood test coming up indeterminate, and although a follow up CT scan revealed no issue, he is being referred to an infectious disease specialist because they are worried about latent TB. How likely is it that my husband actually has latent TB, or is it showing up indeterminate because of his immunosuppressant? What are his treatment options if he does have latent TB?
A: It is very important that your husband has been tested for TB prior to starting a biologic, since if TB were present and inactive, it could become re-activated on biologic medications. You are correct that your husband’s TB test may be resulting as “indeterminate” because of his immunosuppressant. Going to the infectious disease specialist seems like a good way to be sure. If the doctor does find evidence of latent TB, then anti-bacterial medications to treat the latent infection, such as Isoniazid, may be prescribed. Once the treatment for latent TB has been started, patients are able to proceed with their biologic treatment for Crohn’s.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: I had resection surgery for Crohn’s disease 3 years ago. I had a scope several months after surgery that showed ulcers at the anastomosis site. My recent scope showed that the number of ulcers has increased but my doctor does not consider it a recurrence. I have started to have GI symptoms. Is this typical to have an increase in ulcers and symptoms? I am worried it is a flare-up. How can doctors tell if this is a flare up or recurrence? I am currently on Entocort and no other IBD medication.
A: I would consider your GI symptoms along with colonoscopy findings showing ulcers as indications that your Crohn’s is active (you could call that either a flare or recurrence, I think both are the same in this case). Entocort (budesonide) is a steroid, and should only be used as a short term treatment to induce remission. It should not be used long term to maintain remission. It sounds like you should discuss starting a more long term medication to treat your Crohn’s with your doctor, either an immunosuppressant or biologic. I think it is important to do this soon so that your disease does not continue to progress---we do not want you to need another surgery down the line.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: I had my first Remicade infusion two weeks ago and been off steroids for a week. Is this normal to continue to have really bad pain? The day after the infusion my pain increased. Is my treatment not working or does it take a long time for it to work?
A: Remicade has 3 “loading doses” during which time you are getting to the right level of drug in your system. The drug is dosed at week 0, 2, and 6 initially. Sometimes patients will need a longer period of overlap with steroids and Remicade in order to give the Remicade more of a chance to work. Or, sometimes your doctor may need to adjust the amount of Remicade you are given during the infusion. Also, it will be important to work with your doctor to find out why the pain is occurring—if it is due to the active inflammation in the intestine, a narrow area, scar tissue, or maybe something else. Not all pain is caused by active inflammation, so it is important to know why it is happening so that the correct treatment can be chosen.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: My daughter has had Crohn’s disease for 6 years. Three months ago she developed an anal stricture and has had 2 colonoscopies and dilatations. Is this stretching only achieved by full colonoscopy? The prep is so hard for her to keep down. She currently takes Imuran, Apriso and Entocort but is flaring more and the doctor has recommended a biologic. How are the options for choosing a biologic usually compared? Remicade vs. Stelara vs. Humira etc?
A: Stretching of an anal stricture can sometimes be done via flexible sigmoidoscopy (a short scope into the bottom of the colon). However, some sort of bowel prep would likely be necessary. There are several different options of bowel preps, so perhaps your daughter can work with her doctor to find one that is easier for her to tolerate.
In terms of her medication regimen, it sounds like changing medications would be a good idea. Entocort (budesonide) is a steroid medication, and should only be used for a short time to help induce remission, but should not be used as a long term maintenance medication. Also, it is targeted to the end of the small intestine (terminal ileum) and right side of the colon, and is likely not helping the anal stricture area. Apriso is FDA approved for mild to moderate ulcerative colitis, and is likely not effective for Crohn’s disease that is causing strictures. Biologic medications such as the ones you have mentioned are effective for moderate to severe Crohn’s that has failed to respond to other medications. Remicade and Humira are both antibodies directed again TNFa, one part of the overactive immune response that is attacking the intestine. Remicade is given as IV infusions, 3 times in the first 6 weeks, and then every weeks. Humira is a shot every 2 weeks. Stelara is an antibody against two chemicals involved in the immune response, IL-12 and IL-23. It is given as a one time IV infusion, and then a shot every 8 weeks. All are effective, and your daughter’s doctor may be best able to discuss the risks and benefits in her particular situation.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: I am 20 yrs old and was diagnosed with UC in 2009. I was on the anti-depressants celexa and amitriptyline to help with my depression. I came off of the antidepressants three months ago. Since coming of the antidepressants my depression, anxiety and colitis all got worse. Are there better antidepressants that can help control my diarrhea and inflammation. I currently take protonix, and welchol.
A: Treatment of depression and anxiety are very important parts of your care, and very important parts of your overall well-being. However, anti-depressants cannot control the inflammation caused by your UC. Amitriptyline may have helped slow the diarrhea, but again it was not treating the underlying immune over-activation that is causing inflammation in your colon. In addition to treating the anxiety and depression, it is also important that you get on effective medication to treat your UC. From the medications listed, it does not appear that you are currently on any UC therapy, and it will be important to work with your gastroenterologist to find an effective therapy for your to control the inflammation, and, in turn the diarrhea.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
November 2017
Q: How common are emotional problems while on biologic medication? I’ve been on a biologic for 3 years and I've experienced severe mood swings and deep depression and feel like I'm not myself. I get angry for no reason and am very irritable and I cry all the time. I need to take this medicine because I have severe Crohn’s but I can't take the emotional side effects anymore.
A: Emotional problems related to being on a biologic are not commonly reported in the literature. However, there are many other factors to consider in terms of mood and the complexities of having IBD. If you are feeling significant changes in your mood (i.e. depression, anger, anxiety, etc), you should address this quickly with your primary care provider or your gastroenterologist. Working with your providers to assess mood, the factors that may contribute and how to stabilize your emotions is important! They may recommend a review of your medications, a consultation with a mental health provider and/or an assessment with a psychiatrist. You must be your own best advocate. It is necessary to speak regularly with your providers about not only changes in your physical health, but changes in your emotional and mental health. This ensures that you are receiving the right care from a variety of specialties to address all aspects of your health.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2017
Q: I have Crohns with strictures all over small and large bowel. I have been taking Mesalamine and Imuran. I will be having an MRI soon to check if there is improvement. Is there anything I can do in terms of Diet and Lifestyle to help heal the strictures?
A: This is a great question – the answer will really depend on where the stricture is located, how many, how tight they are and if there is an active inflammatory component to them or are they the result of chronic changes from disease activity. The recommendations we make for people with Crohn’s disease strictures is to make sure that they are careful about fiber intake and higher-residue food intake. Working with a registered dietitian can help identify a dietary strategy that factors in personal preferences but also safe foods. We recommend small frequent meals, chewing food well, eating slowly, and monitoring for vitamin and mineral deficiencies that can occur due to a restricted diet.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: Does Crohn's Disease affect your menstrual cycle? I used to have regular cycles but for the past two years I have had about 4 cycles. Could the change be caused by the Remicade or steroids I'm on?
A: Crohn’s disease – particularly when it is active with associated weight loss, anemia, and decreased nutrition can result in abnormal menstrual cycles or missed cycles. When the anemia, inflammation and weight are corrected, the cycles do tend to return. The medications used to treat Crohn’s disease don’t typically have a direct effect on the period. However, I would definitely discuss this with your gynecologist to make certain there aren’t other additional issues such as endometriosis or fibroids or hormonal changes that can result in abnormal periods.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: If a patient has been on Azathioprine and balsalazide for 15+ years. What blood tests should be performed for routine monitoring? My husband's GI has been just doing a CBC, but as a result of his yearly physical lab report (with family practice dr.), we learned he has liver impairment. Are regular liver tests standard if you take Azathioprine? Should I be concerned about the level of care he's receiving from his current GI doctor?
A: Thanks for the question – monitoring while on medications is important as we can sometimes pick up on subtle changes and act on them before they become a problem. Balsalazide is generally a very safe and well tolerated medication and doesn’t require strict monitoring like some of the other medications. We do recommend checking kidney function through bloodwork at least every year with something called a metabolic panel or profile. This is because there is a rare condition called acute interstitial nephritis associated with this class of medications – I have to emphasize that this is really uncommon, but it’s simple enough to check kidney function annually with blood work, especially if you are taking other medications that can affect the kidneys or have conditions affecting the kidneys (but you are probably already being monitored for that already.
With respect to azathioprine, we do recommend getting routine bloodwork – depending on how long and how stable the dosing regimen has been, it can be every 3-6 months. In my practice, I check a CBC (complete blood count) to monitor the White blood cell count number, which can occasionally be low while on the medicine; the Hemoglobin/Hematocrit (which helps us look for anemia), and the platelets which are a subtle and non-specific marker of inflammation. I also check what’s called a complete metabolic profile to check kidney and liver tests, azathioprine can sometimes increase the liver numbers, so we monitor that as well. Also, we recommend at least annual skin exams while on azathioprine, sun protection and to reapply given the association with an increased risk of skin cancer.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: I'm 25, have Crohn's Disease, and am currently regulating it with diet as I didn't respond well with the different medications. I get sores in my mouth during flare ups, but this time is the worst I have ever experienced. I have sores all along my jaw and cheek inside mouth causing a pretty swollen cheek. It's been like that for almost 2 weeks now. Any suggestions on what to put on the sores or how to get inflammation in cheek to go down?
A: My first thought when reading this is that you may have active Crohn’s disease as oral aphthous ulcers tend to be present during active disease. The first thing I would recommend is to get an evaluation of your disease activity. In terms of addressing the symptoms, mouthwashes or rinses that contain steroids and analgesics such as viscous lidocaine are temporizing measures but treatment of the underlying issue is the key. If there isn’t active Crohn’s disease, other causes can be vitamin/mineral deficiencies – zinc, iron, b12, etc, or viral infections or other autoimmune conditions such as Behcet’s disease. However – I suspect that your Crohn’s disease isn’t as well controlled as it should be and would recommend an evaluation, particularly if you are this symptomatic.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: My son has Crohn's and was on Remicade+MTX from past 5 years. He started with flare-up recently but his Remicade blood levels were normal with no antibodies detected? What does this mean? His blood tests and endoscope showed elevated Eosinophils. Colonoscopy showed inflammation in colon. Does it mean the Remicade became ineffective even with no antibodies? Or could it be due to any other infections or food allergies?
A: It depends on how “normal” the levels are – during active disease, sometime patients require higher dosing and adjustments to still keep them therapeutic. For example, therapeutic is a value > 5, but if someone is symptomatic with a level of 6, they may do better with higher dosing or shortened intervals. If the levels are an acceptable level and there is active disease, then this means that he likely lost response to Remicade/MTX combination – meaning, in simple terms, that his Crohn’s disease outsmarted the medications and he would potentially be better with a medication that works in a different mechanism of action such as vedolizumab (Entyvio) or ustekinumab (Stelara). However, discuss this with your gastroenterologist first.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2017
Q: I was diagnosed with ulcerative colitis in 2013 and then indeterminate colitis in 2015. I was put on prednisone and azathioprine. My doctor left and I was sent to a new doctor. They ordered colonoscopy and CT which came back showing no IBD. Can this happen because of the medication? All previous scopes, biopsies, and scans since 2013 have come back positive for IBD. I am very confused. Is it possible to get different diagnosis over time?
A: This is a very interesting thing that we have been seeing in some patients. We call it histologic normalization.
We recently published something from the University of Chicago with our findings in many patients. See link below.
Overall conclusions here: https://www.ncbi.nlm.nih.gov/pubmed/28238954.
Histologic normalization of colonic mucosa can be used as a clinical endpoint for patients with UC. We associated histologic normalization with increased odds of relapse-free survival compared with endoscopic healing or histologic quiescence. Further studies are needed to determine whether histologic normalization should be a goal of treatment for patients with UC.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2017
Q: I was recently prescribed 1g Asacol foam enema. I was on the Salafolk ones for about a week
but I was told it was the same stuff so didn’t really worry. I’ve been having a tougher time with
these Asacol ones. I just can’t seem to hold them in as long, some nights they seem to come
out right away. My usual time of holding them in at the moment is about an hour before I need
to go. Is this enough time for the medicine to work?
A: Typically the foam based formulation is easier to hold than the liquid formulation. It should get better the longer you are on therapy. If it is not improving, I would discuss with your physician about a change of the formulation back to the liquid if that was easier to hold.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2017
Q: I’ve looked at the drug profile for ulinastatin and it seems as though it would be a good fit to treat severe, refractory Crohn's disease. It may also stave off fibro stenosis for those with a stricturing phenotype administered post-op following resection. I wonder why more studies haven't been conducted? What are your thoughts on this as a treatment option?
A: This is not a therapy I had heard of until this question. I was able to find a few in vitro studies, but no clinical trials are currently being conducted.
I have passed this along to our clinical trial team as they may have more information. I am sorry I don't have more information for you.
http://onlinelibrary.wiley.com/doi/10.1111/j.1744-9987.2011.00967.x/full#references
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2017
Q: I was diagnosed with Colitis last year. I was first prescribed Pentasa and now Mezavant both started to work for 3 months but not anymore. While on both medications I found sex painful. I went to see a Gynecologist who told me that there was a lump on the left side where I felt the most discomfort. Could my colon be inflamed? I'm lost as to what doctor to see and what my options might be.
A: If your gynecologist felt a lump they should have followed this up with an ultrasound. It is possible that your colon is inflamed making intercourse painful.
I would follow-up with your gynecologist and your gastroenterologist to ensure that you have healing on these medications.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2017
Q: I was diagnosed with CD 10 years ago at age 26. The disease is classified as mild to moderate to date. I have managed it with only two antibiotic courses as treatment. My doctor wants me to treat the disease when most days I don’t think my symptoms warrant treatment. In addition the treatments risks don't seem to outweigh the benefits for me. How do you make the decision what treatments are better than the disease itself and which treatments are best for mild to moderate case of Crohns?
A: Mild to moderate Crohn's disease should be treated. As even when you don't have symptoms you likely have ongoing inflammation what we call "subclinical" inflammation.
If your disease mild to moderate depending on the location of the disease and whether you have any stricturing or abscess/fistula there are multiple medications that can be recommended. You should follow-up with your gastroenterologist to discuss treatment options. Untreated disease overtime can require surgery, medications prevent surgery and progression of disease including colon cancer related to Crohn's disease in the colon.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2017
Q: I have not had a bowl movement in almost a week. Can this be a problem associated with Crohn’s Disease? What should I do?
A: Constipation can be associated with Crohn's disease. However this type of problem should be evaluated with your provider.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2017
Q: I've been on sulfasalazine for 22 years with no problems. My uc has never been severe as far as my symptoms. At 62 years old, I'd like to stay on sulfasalazine. After my recent colonoscopy my GI wants to try Entyvio. I'm very reluctant and can't figure out why. My former GI retired and this is a young new GI. Not doubting his experience but I'm leaning toward staying with sulfasalazine. Are there any long term side effects of sulfasalazine that would justify my GI changing to Entyvio.
A: Since your diagnosis we have changed the way we manage disease. While sulfasalazine is a very effective therapy to manage ulcerative colitis, I assume that your new provider found active inflammation on your colonoscopy (despite you feeling well), we call this subclinical disease. Currently our goals are to treat to mucosal healing which means you feel well and your colon looks healthy. Entyvio is a safe therapy that only impacts the immune system in the gut. If your provider is recommending escalation of therapy it is likely due to the fact you have ongoing inflammation in your colon. I would address your concerns about the new therapy with your new provider or seek a 2nd opinion.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2017
Q: Can Crohn's Disease or Humira or both be linked to gum disease and skin abscesses?
A: Good question.
Crohn’s disease can be associated with gum disease. Gum disease would not be a common association with Humira.
With regards to skin abscesses, if you’re referring to abscesses around the anal region, then Crohn’s disease (but not Humira) can definitely be associated with this. As far as skin abscesses on other parts of the body, this can occur with immune suppression of any kind including Humira. If your gastroenterologist has not evaluated the skin sores already, it would be a good idea to speak to him/her.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I have Crohn's Disease and sometimes develop canker sores that form on the tongue, lips, and gums. Can you explain what they are and how they are treated?
A: Crohn’s disease, either directly or indirectly can cause oral sores. Oral sores are rather common, present in 20-50% of Crohn’s disease patients. The sores are generally just breaks in the lining of the mouth that result in an ulcer. Since Crohn’s disease can affect any part of the gastrointestinal tract from your mouth to the anus, these sores may be a result of the disease. Crohn’s disease can also result in nutritional deficiencies (i.e., folic acid and other B vitamins) that can make a patient more prone to mouth sores. Additionally, methotrexate, a medication used in Crohn’s disease, is a common culprit for mouth sores.
Generally, if the sores are from Crohn’s, treatment of the Crohn’s itself can causing healing of the ulcers. If you’re taking methotrexate, you can increase the amount of folic acid taken on the day of the methotrexate itself (to say 5 pills that day). If neither of these are the issue, your doctor can evaluate for nutritional deficiencies that may be playing a role.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I was told one year ago that I had ulcerative colitis. Is constant pain, cramps and an extended abdomen common symptoms of the disease?
A: Ulcerative colitis can present with a variety of symptoms including abdominal pain and bloody diarrhea. However, symptoms don’t always indicate that the ulcerative colitis is active. The reason is that several other disorders can also cause the symptoms your describe. Your doctor through various objective tests (i.e., imaging, endoscopy, and labs) can determine if it is your ulcerative colitis or another disorder that is contributing to your symptoms.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: How definitive is a diagnosis of Ulcerative Colitis? I have been in remission for 11 years, and have not taken any medication for 5 years. Does it make sense to get reevaluated to see if this diagnosis can be removed from my medical history?
A: Thanks for your question.
Without seeing the records, your first question is a difficult one to answer. Occasionally, the diagnosis of ulcerative colitis may be more difficult to make. Having the diagnosis of ulcerative colitis in your records can be challenging for several reasons.
If you have no symptoms and your colonoscopy continues to show no active colon inflammation, then your disease may be in remission. I would discuss the validity of the ulcerative colitis diagnosis with your gastroenterologist who has access to your previous records.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I am 40 years old and have had ulcerative colitis for 30 yrs. I've been on 5ASAs most of the time with Prednisone to help on the occasional flare-up (once every few years). Recently flare ups have been coming back more often (2 flare ups in the last 9 months) and my doctor wants me to change to a stronger medication. He has suggested either 6MP or Humira. Does one work better in terms of response, safety and side effect? How do I choose one over the other?
A: Great question.
The side effect profile and safety issues for 6-MP and Humira are actually very similar. 6-MP is typically started with prednisone because it takes 2-3 months to work. Humira usually starts working in 4-6 weeks and may require a shorter course of prednisone before it kicks in. As far as which agent is more effective, this may vary from patient to patient. In general, Humira appears to be more effective. The choice of one over the other really depends on multiple factors including choosing between injections vs. pills, the labs sent prior to starting these therapies, and insurance coverage.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I have had a rash around my mouth and now has moved around my eyes for about 9 months now. The doctors thinks it is perioral dermatitis, but they aren't sure? I have been on remicade for about two years and currently on prednisone to reduce lip swelling and the rash goes away. The rash comes right back after I’m off the prednisone. How can this condition best be treated?
A: Thanks for your question.
I would see your primary care doctor and perhaps a dermatologist as the rash could represent other diseases apart from inflammatory bowel disease. After you obtain a more formal diagnosis of the rash, a better treatment regimen may be recommended. Staying on prednisone for the rash is not the ideal treatment strategy.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2017
Q: I'm 15 and in high school. I wanted to know if I can get some advice on how to handle my Crohn’s symptoms in school. How to deal with embarrassing situations of needing to go to the bathroom in school and in public.
A: Proper preparation can help with the stress or anxiety of a potentially embarrassing situation. Make sure you have an “emergency kit” in your locker or school office. Tell a trusted friend or teacher where you keep it, in case you need someone to bring it to you in the bathroom. Common items for the kit include: wet wipes, underwear, pants or leggings, large size freezer bag to transport soiled clothes, hand sanitizer and perhaps some Poo-Pourri or air freshener. It is important to remember, you may NEVER need these items, but it can feel reassuring to know they are available.
In terms of frequent or urgent bathroom use, speak to your teachers about your IBD and let them know you may need to leave the classroom without permission or a pass. If they know ahead of time, this can take away the focus of your bathroom use and normalize the experience. It is important to de-stigmatize your IBD and therefore, talking with friends and teachers can help them to understand your needs and provide you with support when needed. There are also options for accommodations through the 504 Plan that you, your medical provider, teachers, parents can develop if your IBD and treatments are affecting your school performance or experience. For example, you may be able to “stop the clock” during exams if you needed to use the bathroom. There can even be ways to keep an emergency kit in or very close to the school bathroom you use.
It's important to remember that stress doesn’t help anything. Therefore, if you are feeling embarrassed, reach out for support. Often times we experience more anxiety related to the possibility of a situation happening, and forget that whatever you are faced with…you will be able to cope. Having a good support network can make coping much easier. For additional information about being a teenager with IBD, check out: http://www.crohnscolitisfoundation.org/assets/pdfs/teenguide.pdf
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
April 2017
Q: I have Crohn's Disease and I’m having a hard time coping with this disease. My furry friends are the only ones that are interested in hanging with me in the bathroom and stay with me while I am in flare up mode. Is it possible to get a service dog with a condition like CD? How do I go about getting a “service animal”?
A: There are many ways to gain emotional support when coping with a chronic illness and an emotional support animal may be one avenue. It would likely be easiest for you to get approval for an emotional support animal if you are working with a mental health professional who can write a letter of support. Typically, symptoms of a chronic illness and the impact on one’s emotional functioning would need to be documented by a licensed professional. The health care provider, in their professional capacity, should have the ability to document your disability and the need for a reasonable accommodation of an emotional support animal. This provider could speak to the manner in which an emotional support animal will aid with alleviating some of the challenges associated with your disease and enhance your day to day functioning. If depression and anxiety are present, the provider may also highlight the ways in which an animal companion can help you manage mood symptoms which can improve your overall quality of life on a daily basis.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
March 2017
Q: I have IBD and I’m looking for good breakfast ideas. It seems no matter what I eat in the morning it goes right through me.
A: I would recommend first discussing with your physician whether your disease is well controlled and in remission or whether you have active disease. Ideally if your disease is well controlled you should be able to tolerate any type of breakfast. You are not alone. Many patients with active disease tend to have most bowel movements first thing in the morning or after breakfast. I would recommend minimizing caffeine and hot fluids which both can accelerate intestinal transit. Fatty foods may also result in bowel movements soon after eating. Many of my patients anecdotally tolerate oatmeal or cream of rice the best. Bananas and peanut butter also seem to be well tolerated. For patients who have narrowing in the bowel, smoothies are also great breakfast options.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: In ulcerative colitis patients, do most cases of colorectal cancer start as polyps or dysplasia? How fast does dysplasia develop and grow to cancer?
A: In patients with IBD the sequence of polyp to cancer, if related to IBD, may not follow the same sequence as regular polyps. Colorectal cancer in IBD starts with some type of lesion, but these may be very difficult to see. The timing of dysplasia going to cancer may also be accelerated. For this reason, we recommend frequent screening – every 2 years in all patients after 10 years of disease with Ulcerative Colitis, and in Crohn’s Colitis if more than one third of the colon is involved. Patients with Primary Sclerosing Cholangitis (PSC) need yearly colonoscopies as their risk for colon cancer is particularly high. As lesions predisposing to cancer in IBD may be flat rather than look like polyps, it is also particularly important to have the best preparation possible, and to have a colonoscopy performed by a physician experienced in the care of IBD patients.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: I have CD for many years. I recently had colonscopy #5. Since then (3 weeks) I'm feeling like I'm still doing the prep!! Urgent rush to the toilet at all hours day and night for a big rush of blood or brown water! How do I make this symptom quit?
A: I recommend calling your provider to discuss whether you are having a flare of your disease or if you may have concurrent c.difficile infection. Colonoscopy preparations should not cause your IBD to flare, but may alter your gut flora. I would recommend discussing your symptoms with your provider.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: I have severe ulcerative colitis of the entire large colon. Is it safe to use prednisone 20 mg daily, lialda (mesalamine) 2.4 gm 2x daily and sulfasalazine 1,000 mg 3x daily together? I'm worried about taking so much medication.
A: The goal in the treatment of patients with IBD is to use steroid sparing medications as much as possible. If you have been on steroids long term, escalation of your therapy should be considered. It is not unusual for patients to be on both steroids and mesalamines while trying to get in control and this is safe. I typically do not have patients both on lialda and sulfasalazine but your provider may have reason for this – perhaps joint pain. Currently there should be no safety issue in the combination that you are currently presently taking.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: I am 28 years old and was diagnosed with UC in May 2016 (first flare). I had a second flare in Sept 2016. I was hospitalized both times. I am now on 5 mg of prednisone (every 3 days) and salazopyrin (3mg pd). I feel that a flare might come again. I feel tired and have gas. This potential 3rd one comes 4 months after the last one. Which is exactly the same amount of time between the first two. How can I manage my disease proactively?
A: Given two hospitalizations in a year, I think you should discuss with your provider considering escalation of therapy – proactively your provider can check blood and stool tests to see if there is any active inflammation, a repeat endoscopic evaluation could be in order as well. The goal is that you get off steroids to avoid long term complications of these medications and that your disease be more deeply controlled. Many patients also monitor their symptoms closely by journaling or using apps such as GI Buddy – and this can give helpful information to your provider.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
January 2017
Q: I have Crohn's and had a ileo-colic resection of about 17 cm two years ago. I am in remission and eat a healthy diet but my Vitamin D and B-12 are borderline low. (B-12 209 pg/ml, D 23 ng/ML) Do I need B-12 shots, or how much oral supplements do I need?
A: Vitamin B12 is an important vitamin needed for red blood cell production, proper functioning of nerves, and even making DNA in new cells. The human body cannot make its own vitamin B12, and in the diet vitamin B12 comes in the form of animal based foods. Most B12 is absorbed in the distal terminal ileum of the small intestine, an area often affected by Crohn’s disease. Lab measurement of B12 levels is not exact, and we usually aim for levels >300 pg/mL in order to be on the safe side because B12 is so important. The most reliable method of supplementing vitamin B12 is through shots, but it is also possible to take high dose pills (1000-2000mcg a day), pills that go under the tongue and are directly absorbed into the blood, or by nasal spray. No good studies have been done comparing the efficacy of these methods in Crohn’s disease patients, so it is important to have the B12 level re-checked after you and your doctor have selected a way to supplement your levels.
Vitamin D is important for bone health, and may be involved in the immune response as well. We generally aim for vitamin D levels above 30ng/ML, which can likely be achieved by taking a daily oral supplement of Vitamin D3 600-1000 IU daily if you level is between 20-30.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
January 2017
Q: My 62 year old mother was diagnosed with UC a year and a half ago and has developed pyoderma gangrenosum on her leg. She has four lesions ranging from the size of a nickel to the size of tennis balls. She recently started Humira. How long on average does it take for the lesions to heal? Are there cases where the skin condition does not heal?
A: Pyoderma gangrenosum is a rare skin condition that can be associated with UC. Because it is rare, there is not much data available. We do know that the rates of response to Infliximab (Remicade) and Adalimumab (Humira) have been high, though unfortunately, nothing is 100%. The information we have is limited to a few people, but it suggests that patients often saw some improvement with a few weeks of starting an anti-TNF medication like infliximab or adalimumab. However, complete healing often takes several months.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
January 2017
Q: My daughter has hidradenitis suppurativa which the doctors think is associated with the Crohn's Disease. She has flare ups in her vaginal area as well as her armpits. Can this be a symptom of Crohn’s disease and if so, how is it treated?
A: HIdradenitis suppurativa(HS) is not a symptom of Crohn’s disease, but there does seem to be some relationship between the two disease—people who have one of the two conditions are more likely to also have the other. HS is often treated by dermatologists, as it is a condition of the skin. Some possible treatments include antibiotic creams, steroid injections, or oral antibiotics. For more severe disease, treatment with medications that are also used for Crohn’s disease, such as infliximab (Remicade) and adalimumab (Humira) have also been used.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
January 2017
Q: I'm female with acute CD in the terminal ileum. I was on Remicade for 8 years with great success, but am now in the midst of my first flare-up. The doctors tell me that I have an abscess, a developing fistula, and a pretty severe stricture in the ileum (which is my big problem area). I'm currently on antibiotics for the abscess, TPN, and a clear liquid diet. My doctor wants me to have surgery, but I want other options to consider first. What are some other possible treatment options?
A: When an abscess develops, this indicates that the Crohn’s inflammation has burrowed all the way through the intestine wall, and has actually made a hole in the intestine wall. The little hole in the intestine allows the contents of the intestine to leak out into your abdomen, and you body defends itself by walling off the area and creating an abscess. Surgery is required to fix that hole in the intestine wall, because medicines are not able to do that.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2016
Q: I had a right hemicolectomy in June 2015 with removal of the ileocecal valve. I have had constant severe diarrhea since that time. I have tried many medications with no success. Any suggestions?
A: The ileocecal valve is an anatomic landmark that connects the ileum (small intestine) and colon (large intestine). Unfortunately, many questions concerning its function and structure remain unanswered. We do know that the intestinal contents pass from the ileum and into colon through this valve, and the passage is controlled by chemicals in the blood stream and nerves supplying the intestine. Furthermore, the valve may help maintain a difference in the bacteria found in the colon compared to the ileum.
Most patients who have their ileocecal valve removed do not experience any long-term change in their bowel habits. The frequent or loose stools (diarrhea) that do occur in others can result from multiple causes that must be sorted to determine the best treatment. If a large amount of the ileum has been removed with the ileocecal valve, the body is unable to manage fat in the diet, and the resultant diarrhea (steatorrhea) tends to be associated with oily stools that may float and are particularly foul-smelling. In this instance, a medication (cholestyramine) taken at mealtime can improve the diarrhea. In other patients, the diarrhea occurs because of colon bacteria now residing in the ileum (small intestine bacterial overgrowth). This overgrowth can also cause bloating and pain, and is usually managed with antibiotics taken for 1-2 weeks, but repeated courses may be required. Lastly, the diarrhea can result from the intestinal contents passing too quickly along the length of the bowel. Anti-diarrheal agents (diphenoxylate plus atropine, loperamide) can slow this passage to decrease the frequency of the stool. Moreover, over-the-counter fiber products may help increase the stool’s consistency.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2016
Q: I had surgery in 2000. I had my colon removed and had a "j" pouch to avoid an ileostomy. I have developed a skin irritation that will not heal because of the frequency of bathroom use. It is extremely painful and I am requiring prescription pain killers. Is there any information on ways to help the skin heal?
A: Irritation of the skin around the anal area (perineum) caused by frequent stools (diarrhea) or poor control (incontinence) is caused by many factors working together. Frequent cleansing causes damage from abrasions and alters the skin’s protective acid content (pH). Excessive moisture further alters the skin’s pH, which increases its porousness (permeability). In addition to the local inflammation caused by cleansing and moisture, infection may develop as germs contained in the stool can penetrate the traumatized and porous skin.
Management of the perineal skin damage requires local measures as well as identification and treatment of the underlying cause. Perineal skin cleansing should be performed after each stool or incontinent episode. Specific cleansers are available in many forms (emulsion, foam, liquid, towelette). Bar soaps, skin cleansing agents, and antibacterial hand-washing products can worsen the problem.
The affected skin needs to be moisturized to reinstate the depleted factors. Humectants (glycerin, lanolin, methyl glucose esters, mineral oil) contained in perineal cleansers replace the skin’s natural oils. No-rinse perineal cleansers with humectants minimize drying because they remain on the skin rather than being rinsed away. Moisture barriers (protectants) contain active ingredients (dimethicone, lanolin, petroleum jelly, zinc oxide) to shield the skin from exposure to irritants and moisture. A moisture barrier may be incorporated into skin cleansers or separately applied as a cream, ointment, or paste. Ointments and pastes are longer lasting and more occlusive.
Liquid barrier films or skin sealants combine a solvent that evaporates and a polymer that dries to form a barrier when applied. Some solvents may irritate the damaged skin, and any product should be accordingly used only if not associated with stinging during application. A liquid film barrier should not be combined with a moisture barrier because these agents are typically incompatib
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2016
Q: My 14 year old daughter has Crohn's and takes methotrexate injections. She struggles to eat the most basic foods without feeling unwell. Is there any meal replacement shakes that is suitable for have age?
A: There are definitely several options of nutritional shakes available for her age. Any nutritional supplementation or especially "meal replacement" should be done with the supervision and consultation of a registered dietitian. I would recommend asking your daughter's gastroenterologist for a referral to meet with one to discuss further.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I have tried all the meds, biologics included and after many years of little relief, I searched for natural alternatives. My UC maintained remission for 4 yrs and I have been able to control my pain and inflammation with Matcha green tea. I drink 2 cups a day but this isn't your typical over the counter tea. I buy it in powder form. Is this something you have heard of before?
A: I know patient who have received relief with homeopathic options like green tea or peppermint tea or oil. These options have not been well studies and it is worth checking with your gastroenterologist to make sure they are safe and will not cause any inadvertent harm.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: With the combo of medication + having a chronic illness, what is a good way to cope with anxiety and depressed feeling?
A: The best ways to cope with anxiety and depressed feelings are to work with a counselor or therapist to figure out what aspects of what is causing those feeling are controllable and which are not. For things in your control to change, finding distracting activities (things you have a passion for), exercise, and good social support is best. For things you cannot control, like having IBD, finding the best coping techniques to not get as stressed out about it. These techniques I describe are called cognitive behavioral therapy. These techniques are available through counselors or through self-help educational tools like golantern.com.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: Please discuss medical cannabis vs opiates for pain management. I have RA as well and the NSAIDs are a nightmare for my Crohn’s.
A: While some patients report relief of their abdominal pain and nausea with medical cannabis, there is growing evidence that there may be negative effects on the brain - especially with long term use. These can be memory and attention problems, slowed reflexes (when driving) and for some patient development of anxiety, depression, and feeling paranoid. At the moment there is not enough evidence for the medical community to say how safe medical cannabis is but it is being studied.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I have Crohn's and have joint pain that is constant, despite my guts being in remission from Humira. I am interested in finding non-drug ways to cope with the pain. I've had some success with acupuncture. What alternative approaches have been shown to help with IBD related joint pain?
A: There is some evidence that acupuncture can help patients with irritable bowel syndrome. For IBD, there are small studies showing benefit of yoga and mindfulness meditation.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: How do you deal with chronic mouth ulcers
A: There are numbing agents that you can swish in your mouth that your gastroenterologist can tell you about. Hypnosis can also be very useful for helping ulcers.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: Can you talk about the impact of disrupted sleep on Crohn's disease and what is being done to help patients who have these issues (who aren't on steroids)?
A: Disrupted sleep can make IBD worse- worse inflammation, more pain, and also predisposes people to more anxiety and depressed mood. Disrupted sleep can be having trouble falling asleep, multiple awakenings or not getting enough sleep. Many medical sleep societies recommend all adults need 7-9 hours per sleep a night.
Most important things to do to help sleep disruption is doing enough physical activity during the day to be tired by night, good sleep hygeine (so no bright lights including computers or cell-phone screens in bed) and going to bed and getting up at the same time each night. Sleep can now be monitored on gadgets like fitbits or also apps like sleepcycle.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: For pain management does an IBD patient need to go to a pain management specialist or solely to the gastroenterologist or both?
A: Different GI clinics or practices have different ways they handle pain management. Some gastroenterologists have algorithms that they try first. Many have psychosocial resources available who specialize in pain. Pain experts can be counselors or pain anesthesiologists who can sometimes have success with nerve blocks, TENS units, or vagal nerve stimulators- though these latter techniques have not been well studied.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: Part of the discomfort I feel is caused by a feeling of moving around in the intestine - it gurgles and can be quite loud. Doctors seem to dismiss this symptom but it is actually one of the worst parts of the illness (at least for me). It makes it hard to concentrate on much of anything when your insides are rolling. Is there anything you might suggest for easing the discomfort?
A: To ease the discomfort you describe, you might consider distraction techniques. These are either activities you can do to forget about the gurgling or mind techniques such as meditation or hypnosis. To learn about certified medical hypnotists in your area, you can go to the website of the American Society of Clinical Hypnosis. There are also some good apps available to help teach meditation like headspace.com. Finally, there are educational stress management websites such as www.gameplan.com that can give you ideas too.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: What are the pain management options? NSAIDs are out for obvious reasons. Tylenol only takes edge off. Narcotics have their own list of problems including but not limited to addiction. I've asked for an antispasmodic to hopefully reduce spasms/pain. But this is a last ditch effort on my behalf to control my chronic pain. I'd love to hear any other suggestions.
A: The more chronic the pain, the more it involves the brain. What I mean is that the brain re-organizes if constantly bombarded by pain signals and neighboring brain regions that process emotions (anxiety, depression) and thoughts can also be affected.
Most research supports learning coping skills to reduce these negative emotions or negative or pessimistic thinking as the best way to reduce pain perception. You are correct narcotics have many side effects and have been associated with greater risk of infections and death in patients with Crohn’s disease. There are non-opioid pain medications that have evidence in helping pain – working both on the nerves and in the brain. Finding a pain doctor or psychiatrist who specialized in chronic pain can help you find specific options.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I would like to know more about extraintestinal / non-gut pain relief. Joint pain seems to be a big problem for me, even when the Crohn's is mostly in remission. Tylenol has been the only thing I can take without unpleasant side effects. What natural pain relief options are out there? Also, where is the research on this today? Has there been any progress?
A: First for any type of pain, you want to check with your gastroenterologist to make sure that it is not due to inflammation and other medical causes. The most natural pain relief options are those that do not use medications- brain techniques such as relaxation, meditation and increasing enjoyable activity. For natural pain options, omega 3 fatty acids have been studied but best to check with your doctor.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I understand the myriad of reasons that doctors are opposed to narcotics to treat pain related to IBD. What are we to do when, more often than not, they're the only thing that bring relief?
A: You are correct- there is a growing list of serious problems caused by opioids including tolerance (needing higher and higher dose to treat the pain), brain effects, increased risk of infection and increased risk of death. In vulnerable patients, they can lead to addiction. With chronic use, they can lead to gastrointestinal problems such as constipation and obstruction. There are patients who do well with low dose opioids and careful monitoring but given the risks, it is important to be followed by a pain specialist and to consider other non-opioid options when possible.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: My daughter is 16 and has CD. Her doctor has recommended Remicade. He also indicated that they can now “push the dosing”. He said the infusion can done in a shorter period of time than two hours. I can’t find any information on Remicade infusion being completed in less than two hours. Do you have information on faster infusion times?
A: There are scientific studies showing safety and tolerability of rapid infusions of Remicade. I am not aware of any patient-focused literature discussing this topic. I would recommend bringing your questions to your daughter's physician to discuss further with him or her. This is not yet typically standard of care at most hospitals, but is being offered at more and more infusion clinics.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
September 2016
Q: I recently had a small bowel series, it showed that I had focal narrowing in small intestine with possible structure findings concerning for underlying IBD. They did an MRI a week later, nothing showed up on MRI. I'm so frustrated. I have been struggling with trying to find out what's going on with my stomach for years now. After small bowel series I thought I finally had an answer. Now I'm back to square one. Is it still possible I had inflammation and then it wasn't present at time MRI?
A: I can understand your frustration. Typically, an MRI is a better test for a stricture than a small bowel series. It may be that the small bowel series findings were falsely positive. If there is ongoing concern for IBD, there are potential lab tests that may be helpful as well.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I have UC diagnosed in 2008. It got very bad, 30 plus episodes of diarrhea a day and heavy bleeding. Now I'm struggling with constipation and a hard distended stomach as well as 10 plus episodes per day of passing just blood and tissue. I take stool softeners to keep things normal and reduce pain and bleeding. I am concerned about a blockage or maybe Crohn's in addition to UC, but my imaging doesn't seem to support either of those things. Is what I am experiencing normal?
A: Thanks for your question. It’s difficult to say exactly what may be going on without having more information. If you’ve had a colonoscopy and your UC is controlled (i.e., there is no active inflammation), there may be other causes for your altered bowel movements. The constipation may be caused by medications, irritable bowel syndrome, small bowel bacterial overgrowth, etc.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: Would any of the experts recommend a Paleo diet, probiotics (if so what brand or specifics to look for), or the use concentrated cherry juice for ulcerative colitis flares?
A: This is a very common question. Currently, there is no data to suggest that the Paleo diet or concentrated juices are effective for ulcerative colitis flares. As far as probiotics, not all of them are considered the same.
In mildly active ulcerative colitis, 2 specific probiotics may be useful. One probiotic, E. coli Nissle (aka Mutaflor, Ardeypharm) may be effective in putting you in and keeping you in remission for up to one year. The other probiotic called VSL#3, a combination of 8 probiotics, is effective in putting you in remission and possibly keeping you in remission for up to 6 months.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I have been diagnosed with microscopic colitis. My symptoms are weight loss from 128 to 108 pounds; gas and bloating; mild diarrhea. Could there be particular nutrients that I am not absorbing that explain the weight loss? Are there particular foods I should eat more of in order to gain weight? I have been following the Specific Carbohydrate Diet for two months and believe it helps reduce gas and bloating but I have not been able to regain lost weight.
A: That’s interesting. Weight loss is uncommon in microscopic colitis. There may be several reasons for the weight loss. If the weight loss has occurred since you started the Specific Carb Diet (SCD), it may be due to the food restrictions from the SCD itself. In addition, it may be a good idea to get tested for celiac disease, which is more common in microscopic colitis, and pancreas problems. Both these disease processes are more likely to cause weight loss.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: My GI doctor has recently suggested a new treatment for my Crohn's disease. He has suggested the medication Entyvio. I haven't heard much about the medication, and before committing I'm trying to gather information about medication.
A: It’s always a good idea to gather information on a new medication that is being recommended. Entyvio is a biologic medication that binds a gut-specific protein that is important in causing inflammation. It is given as an intravenously (IV) infusion, a little more initially to induce remission, and then usually every 8 weeks for maintenance. Its safety profile so far seems to be better than the anti-TNF agents like Remicade and Humira. However, it looks like it can take longer to start working than those medications. I would speak to your provider for further details.
You can also obtain more information on Entyvio from http://www.ccfa.org/resources/biologic-therapies.html.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I’ve been taking Pentasa since being diagnosed with CD in 2003. I initially started out at 4 pills 4 times a day at 500mg a pill. My symptoms have been well controlled since. The past 2 years I w/Dr have changed my dosage to 4 pills once a day still 500mg. In the past 2 years my big toe nails have both become discolored and infected. Just recently I have noted getting the tingles/numbness in my arms and legs at times. Could I be having medication withdraw? Or is it just a coincidence?
A: Peripheral neuropathy has been rarely associated with mesalamine products like Pentasa. I don’t know if the discoloration and infection of your toe is related to the Pentasa though. I would check with your provider and ensure that other causes of tingling/numbness in your extremities, especially if these are a persistent symptom, are ruled out.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I've been taking Pentasa for 23 years. First, 4 pills @ 250 mg twice a day and the last couple of months 2 pills @ 250 3 times a day. In both situations I feel the medicine after 23 years has been the cause of my sinus/nasal issues and makes it hard to breathe. I also have a general unwell feeling. Is it possible to build an intolerance to this medicine after 23 years? Prior to Pentasa I took Azulfadine for many years and could no longer take it. What are some other treatment options?
A: Sinus/nasal problems would be an unusual effect of a medication like Pentasa. Things like sinusitis (inflammation of sinus tracts) has been reported with medications like Pentasa in large studies but it is uncommon.
If you have generally been feeling unwell, from an IBD standpoint, it may be important to ensure that your disease is controlled. Often your symptoms don’t correlate with active intestinal inflammation so it is important that labs, imaging, and/or colonoscopy are performed to obtain an objective assessment of the disease. If you do have active intestinal inflammation, there are several treatment options based on the degree of disease severity that you can discuss with your provider.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: How often should a 70 year-old male with Crohns disease have a colonoscopy?
A: This is a very good question. Unfortunately, the answer is more complicated. It’s important to realize that the goals of Crohn’s disease treatment may be different based on a patient’s overall health. Advanced age can occasionally be associated with declining health but not always. Generally, in older age, we treat Crohn’s disease to control symptoms. In younger age (i.e., age <40) , we treat Crohn’s disease to heal the intestinal inflammation and control symptoms. In general, patients who are diagnosed with Crohn’s at age ≥60 have the same risk of developing colorectal cancer as patients diagnosed with Crohn’s at an earlier age.
Colonoscopy in Crohn’s disease may be performed to evaluate intestinal disease activity or evaluate for colorectal cancer from long-standing Crohn’s disease and patient age. There is no consensus on this approach but in my older patients regardless of whether they have IBD or not, I do colon cancer screening colonoscopies if the patient can safely undergo surgery in case we discover malignancy. In older patients in whom I am considering a colonoscopy to evaluate for active inflammation, I take into account the patient’s other illnesses before proceeding.
I would speak to your provider about the risks and benefits of performing a colonoscopy.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: I often hear of ulcerative colitis, but what are microscopic colitis and lymphocytic colitis? Are these types of IBD? Can a patient have both UC and another type of colitis?
A: Lymphocytic and collagenous colitis are the two types of microscopic colitis. They fall within the spectrum of inflammatory bowel disease but behave very differently than Crohn's or ulcerative colitis. A patient generally has either Crohn's or ulcerative colitis or they can have microscopic colitis but not both.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: My Iron levels are low and my GI recommended an iron supplement. Can an iron supplement cause flares or worsen a current flare?
A: This is a controversial topic. There are studies that show that iron can worsen inflammation and those that do not. I tend to avoid oral iron in my patients with more severe disease or who are having flares but I do use it in those patients who need iron and have more mild disease.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Can microscopic colitis change to ulcerative colitis? Or just misdiagnosed? And any relationship between UC and rheumatoid arthritis?
A: And any relationship between UC and rheumatoid arthritis? Microscopic colitis is made up of collagenous and lymphocytic colitis. I have seen microscopic colitis patients who then go on to develop Crohn's or UC but this is uncommon. Microscopic colitis and IBD are diagnosed and behave differently though and the diagnosis should be more clear after an evaluation. UC and rheumatoid arthritis can be found together as they are both autoimmune disorders. You can learn more about microscopic colitis here: http://www.ccfa.org/resources/microscopic-colitis.html.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Does IBS cause IBD? Can patients with IBD have IBS concurrently?
A: IBS and IBD are completely different processes with different causes and complications. A patient can definitely have both processes and sometimes it can be difficult to differentiate between the two when symptoms arise.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Do you use the fecal calprotectin test to monitor your patients GI inflammation? If so, at what intervals?
A: 90 days? I do use fecal calprotectin as a marker for inflammation. There's data that shows it can help predict a flare. I know GIs who use it every three months. In my practice, my use is based on the individual patient.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: How often should a patient have scopes after Pancolitis?
A: It depends on how long a patient has had pan colitis. If it's been 8-10 years, then generally the recommendation is 1-3 years depending on other risk factors (i.e., family history of colon cancer).
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Are there any issues with birth control pills exacerbating UC or Crohn's symptoms in women?
A: Estrogen-containing birth control pills have been associated with development of Crohn's in the past and recently there was a study suggesting that it is associated with a worse course of Crohn's. I would discuss this with your GI.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: What type of diet do you recommend for people suffering Crohn’s and colitis? Is there anything particularly harmful that worsens symptoms or the disease?
A: This is a very popular question. There is increasing interest in this topic and more and more information is coming out. There is some preliminary studies showing that dairy products, red meat, and coconut oil may worse IBD. When a patient is undergoing a flare, I do suggest going on a low fiber diet. Because of the individualized nature of IBD, what works for one patient may not work for another when it comes to diet. Check out CCFA's diet and nutrition brochure to learn about the role of diet in IBD. http://www.ccfa.org/assets/pdfs/diet-nutrition-2013- 1.pdf.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
May 2016
Q: My daughter was diagnosed with cd Sept. 2015 and has been on Remicade but a new symptom we notice sometimes she small leaks from her rectum. Is this a normal side effect?
A: I would recommend that your daughter’s gastroenterologist examine her perianal area at their next visit. Crohn’s disease can cause fistulas (connections from the rectum to the skin), and a physical exam could check for any sign of fistula. Crohn’s disease can also cause skin tags in the anal canal that may contribute to leakage symptoms. This would also be seen on physical exam. I would recommend watching for fever, pain, or redness in this area as a sign of a developing infection. If that occurs, call your gastroenterologist to be evaluated.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
May 2016
Q: What foods should NOT BE eaten to avoid flare-ups? Is there a diet for UC that I can live with and reduce or not have flare ups?
A: There has never yet been a diet proven to help avoid flare-ups in adult patients with ulcerative colitis or Crohn’s disease. When in remission (symptom free), many people can eat a regular diet. However, there is not one diet that will suit everyone with ulcerative colitis or Crohn’s disease. I would recommend listening to your body and eliminating any foods you find trigger unwanted symptoms. During a flare, however, I will typically recommend a low dairy, low fiber/residue diet. This diet can help minimize symptoms that accompany a flare of inflammatory bowel disease.
There are small studies in children suggesting that the Specific Carbohydrate Diet may be able to help control inflammatory bowel disease in some patients. More trials are being done and this is a potentially exciting new development in the treatment of inflammatory bowel disease. This diet is restrictive, however, so I would recommend that you discuss this further with your gastroenterologist and with registered dietician guidance.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
April 2016
Q: I've had UC for 30 plus years and have recently been diagnosed with a rectovaginal fistula at the dentate line. It has been recommended that an abdominal proctocolectomy with an end ileostomy be performed due to the fact that the fistula will be at the level of the cuff if any pouch is made. Does this require an open surgery and is there any way that a pouch or IPAA can be successful?
A: A rectovaginal fistula is a communication between the rectum and the vagina. Most are due to obstetric injuries. Other causes include irradiation, malignancy, congenital malformations, and inflammatory bowel disease. Rectovaginal fistulas are uncommon complications of chronic ulcerative colitis, and are more often associated with Crohn’s Disease. Many are asymptomatic and found incidentally. If the fistula is symptomatic, methods of treatment such as excision and primary layered repair, fistula plug placement, endorectal mucosal advancement flap can be performed. Success rates range from 50-95%. Rectovaginal fistulas associated with Inflammatory Bowel Disease have lower success rates.
Having UC for 30+ years places a person at risk for the development of dysplasia and malignancy. Surveillance colonoscopies are done annually to identify these changes. If high grade dysplasia or malignancy is found, a total procto-colectomy with either end ileostomy or construction of an ileal pouch-anal anastomosis is performed. These procedures are also done for medically refractory cases of ulcerative colitis. Removal of the entire colon and rectum with creation of an end ileostomy is usually performed if the patient has poor anal sphincter function and incontinence is an issue. The total procto-colectomy with ileal pouch-anal anastomosis or “J-pouch” procedure restores near-normal bowel function by creating a neorectum from the terminal ileum. A mucosectomy (stripping the mucosa of the anal canal to the dentate line) with a hand-sewn pouch-anal anastomosis can be performed. Mucosectomy is often associated with injury to the anal sphincters, and impaired fecal continence may be a problem post-operatively. A diverting loop ileostomy is usually performed to allow the anastomosis to heal, and the ileostomy reversed 8-12 weeks later. The operation can be done via an open or a laparoscopic approach. A pouch procedure may be an option for you.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2015
Q: I have both Crohns and Candidiasis. The diets for each seem to be mutually exclusive. I've been eating the same few foods for two years and am going nuts. What can I eat?
A: I find that diet is such an individual topic that can not be generalized to groups of people. There is no diet identified that clearly causes or treats Crohn’s disease when studied in groups of patients. I would recommend that you avoid foods that give you symptoms. It sounds easy, but can be challenging to try to identify trigger foods. Adding foods back one at a time is the best strategy. A food diary can often be helpful as well. The CCFA has published a patient handout to help give advice (http://www.ccfa.org/resources/diet-nutrition-ibd-2013.pdf) and you may find it beneficial to meet with a registered dietician to help customize your diet.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I am taking humira but my insurance will stop in Oct what can I do?
A: Talk with your doctor! It will also be helpful to talk with your contact at the drug company. Some people are connected with a Humira Nurse that assists them. There are programs available through the drug company to help people with low cost or no cost medications based on need. There may also be other programs in your area that your care provider is aware of to help during this time.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I have been having unbearable right side pain the past few months. My doctor did an MRE and said there was scar tissue in the Ileum. I also had another colonoscopy and then the next day was my remicade infusion. For 10 days since then I have been running a temp between 99 & 101, a severe headache & side pain. They did a ct scan and ruled ruptures and infection. Are these typical symptoms following a colonoscopy? What is the treatment?
A: These are not common symptoms after a colonoscopy. Because you are on Remicade, I would recommend being evaluated for sources of infection if you are having a fever. The treatment would become more clear once your care provider finds the source for the problem.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: Are there specific tests that identify TNF as the source of active ulcerative colitis inflammation, or are biologics just automatically tried if immunomodulator doesn't induce remission? I have mild to moderate kidney dysfunction and a family history of lupus. The prospect of starting Humira scares me, especially since I work in a public setting where exposure to infection is constant.
A: In clinical practice, there are not TNF tests available. Because of studies showing that a significant percent of people with ulcerative colitis have a good response (and a higher percent than respond to immunomodulators), they are frequently used when immunomodulators are not helping. All of these medications do carry risks that should be considered, but often the benefit of controlling difficult to manage ulcerative colitis outweighs those benefits.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: My son with Crohn's is on Remicade. He is in college and trying to arrange a semester abroad in Tokyo, Japan. How can we find out if Remicade is even available in Japan? We have tried speaking to pharmaceutical company that makes the medication but to no avail.
A: Remicade is available in Japan. It would require careful planning, but travel abroad can be accomplished successfully. Your son would need to quickly establish care with a GI provider in Japan who would be able to provide the Remicade while he is abroad. His care provider here may be able to help find a hospital or provider that would be appropriate.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I have Crohn’s. I am also taking chemotherapy for uterine cancer and it causes severe diarrhea. I plan to take a combination of Questran (cholestrymine ) and Imodium during the next round of chemo. Lomotil no longer works for me. What other diarrhea control products are available?
A: Diarrhea due to chemotherapy can be challenging to manage, especially when you also have Crohn’s disease. Your plan of Immodium and cholestyramine sounds like a good next step. There is a stronger medication that can help to slow diarrhea, but it is a narcotic medication. If the maximum doses of Immodium and cholestyramine are not effective, you would need to talk to your care providers about the downsides of other options and whether it would be appropriate to try a stronger medication during this time.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I have severe Crohn's. I am on Pentasa 4,000mg/day, Purinethol 50mg/day, Prednisone 20mg/day and just had my 3rd Remicade infusion and I am seeing no relief. I am very concerned about the Remicade and Purinethol treatments as I am seeing no benefits. I am also experiencing side effects from the Remicade that concern me. After each treatment I experience confusion, a drastic drop in blood pressure, trouble focusing the eyes and flushing in the face, should this treatment be discontinued?
A: It sounds like you are really struggling to get your Crohn’s disease under control. I would recommend that you meet with your doctor to review your response to the medications and any side effects that you are having. I can not say whether the treatments should be stopped without seeing you, but your care provider should be able to provide that guidance. I try to give Remicade around 12 weeks to see if it is effective. I then use symptoms and other tests (sometimes labs, imaging, or endoscopy depending on the patient) to help make this decision.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I have CD for 21 years. I am currently on 6mp 50 daily (I cannot tolerate higher dose, it affects my liver) and 1.2 Lialda 4 daily and once again in a flare up. I have tried Humira and Remicade. I have been on prednisone many times in the past and will not go back on. I've also taken Entocort and meslamine. What are your thoughts on Ustekinumab?
A: Ustekinumab is a medication currently used for psoriasis that works by blocking inflammatory proteins called interleukins. There are early studies showing promise in the treatment of Crohn’s disease. Because it does not block TNF, it offers a new mechanism for treating Crohn’s and may be a good option for patients in whom Remicade and Humira have had no effect. It is not yet FDA approved for Crohn’s disease. On an individual basis, it might be the best next treatment for certain patients. Your care provider would need to help you make this decision and see whether insurance coverage would be possible for your individual case.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I just read that Humira has a success rate being 50-60% in mild to moderate cases of Colitis & Crohn's. What is the success rate of Remicade for severe cases of Crohn's? Given the side effects I am having I am considering going off treatment, but I am concerned as I am told that if I need to go back on it, it may not work because the body builds up antibodies against the drug.
A: In patients newly diagnosed with moderate to severe Crohn’s disease, combination therapy with Remicade plus immunomodulator has about 56% chance of steroid free remission at 26 weeks and Remicade alone has about 45% likelihood of steroid-free remission at 26 weeks. This study is not looking at patients who stopped therapy. Stopping therapy does increase the chance of anti-drug antibodies and loss of effectiveness in the future. I would recommend an honest discussion with your care provider before stopping any therapy.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I am currently on Lialda, Canasa, 6-MP, Simponi, levsinex, VSL#3 and miralax. I’m allergic to Remicade and after a year humira didn't help anymore. My stool is mostly formed but the issue is mucous and blood leakage especially when passing gas and before each BM. I’m trying non RX such as l-glutamine and amp floracel. Are there other treatment alternative options?
A: Curcumin has had some evidence showing benefit for mild symptoms. There are other alternative therapies that you will read about on the internet, but they do not have traditional evidence showing benefit in inflammatory bowel disease. That does not mean that they don’t work, but we just do not know enough about them to be able to recommend them at this point. I always recommend keeping your provider involved so that they are aware of everything that you are taking (even supplements). In addition, it is possible that your symptoms are mostly rectal and a topical mesalamine suppository or enema could be helpful.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
July 2015
Q: I am 15 years post IPAA surgery and have developed iritis. I am told that it is an extra intestinal manifestation of UC. Is there any information available about these or other symptoms developing after colectomy? Also what type of specialist should I consult to deal with the systemic part of UC, as my GI feels only qualified to treat the digestive system? I of course also have an eye specialist, but it seems like there should be someone coordinating the treatment of the overall disease
A: There are reports of iritis occurring after IPAA surgery for UC but this not commonly. Iritis can occur with other medical conditions than UC so the eye doctor in collaboration with the primary care provider can decide on any further appropriate evaluation. If you are not having any gastrointestinal symptoms with the iritis, then the eye specialist (such as an ophthalmologist) is an appropriate person to address this issue. Otherwise, unless there are other symptoms after the IPAA for UC, you do not necessarily need another provider to manage your case.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I had a colonoscopy today my doctor said my Crohn's is in remission. However 3 weeks ago I had imaging test and it showed active disease. I'm confused . I had Crohn’s for 30 years and never been in remission and I don't feel any different. What are the definitions for remission and active disease?
A: Thank you for your question. This is a question that comes up often in different forms. Active disease refers to ongoing active inflammation of the intestinal lining, which can be detected by labs, imaging, and/or colonoscopic evaluation. These diagnostic tools often agree with one another but not always, and if the location of active disease is accessible by colonoscopy (i.e., in the colon or terminal ileum), this tool remains the gold standard for evaluation. Ideally, the definition of remission in Crohn’s disease is the combination of no active intestinal inflammation and an absence of disease-related symptoms. However, because symptoms associated with Crohn’s are also present in other
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: Is the IgA and IGa test a good way to diagnosis Crohn’s disease, when all other tests were negative for IBD?
A: Immunoglobulins or Ig are not typically used in the diagnosis of Crohn’s disease. The three scenarios that this test may come up in the evaluation for IBD are:
1) Evaluation for celiac disease, which is associated with IBD, as celiac disease and IBD can have overlapping symptoms
2) Evaluation for common variable immune deficiency (CVID) which can have overlapping symptoms with IBD
3) As part of an antibody panel used by many providers (aka as the IBD-7 panel). These panels can include antibodies like ASCA, ANCA, Anti-ompC, etc, and are often associated with IgA or IgG. This antibody panel is rarely helpful for a diagnosis of IBD, especially when used alone.
IBD is typically diagnosed based on a combination of clinical symptoms and history, endoscopic evaluation (with biopsies if needed), imaging, and labs.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: Crohn's Disease has been a part of my life since 1977. I have had a total colectomy with rectum removal and of course ileostomy. I am currently on no meds except b12 every other month. What is the likely hood that the disease will return? Is there any research on this?
A: Great question. There is some research on this topic but it depends on a couple different things. If before your total colectomy and end-ileostomy your disease was isolated to your colon, then the risk of recurrence with an end-ileostomy is low, about 10-20% over 5 years. If before surgery, the colon inflammation was associated with small bowel inflammation or inflammation around the anal area (i.e., abscesses or fistulas), the risk of Crohn’s disease recurrence would be higher.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: My 18 year old daughter just had a third major flare and is on prednisone again. We are now facing a decision about maintenance with either Humira or Remicade. Both have some serious warnings, but both seem to be discussed as being quite effective. What advantage is there one over the other for a young adult who is college bound? Would it be impractical to schedule infusions when at college or are they available at most hospitals? What are the pro/cons for either?
A: This is a common scenario. Humira and Remicade both have the same mechanism of action and in most people will have similar effects with little difference between the two. The major difference is that Humira is given as a shot (by injection or prefilled syringe) every 2 weeks while Remicade is given like an IV every 8 weeks. Remicade will require that a patient go to an infusion center for each dose. There are infusion centers in most mid-sized to large cities so it may be prudent to determine if there is one near her college. I would suggest that she establish with a gastroenterologist near her college as well
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I was diagnosed with Crohn’s disease about 8 months ago and have been on Lialda but recently have not been doing well. I have lot medication side effects. Is there another drug that is similar that may provide me with less side effects? I am still trying to understand how to control flare ups and wonder if there are any specific tips to help control the symptoms. I am working to limit my drinking and have actually just begun a gluten free diet to try to help.
A: Thank you for the questions. First, I would speak to your gastroenterologist regarding your symptoms and determine if they are due to the Crohn’s or something else. At this point, the two of you can also discuss potential adverse effects from the Lialda. There are other medications in the same family as Lialda and you and your gastroenterologist can discuss the most appropriate treatment plan. By “drinking,” I imagine you are referring to drinking alcohol. Limiting alcohol and a gluten free diet may help but no diet has yet been proven to decrease inflammation from Crohn’s disease that is causing symptoms. When patients have active intestinal inflammation, it may be helpful to decrease high fiber foods and perhaps dairy products and caffeine. I suggest using a food journal to recording food intake and symptoms to determine if certain foods trigger symptoms.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I was diagnosed with Crohn’s in Nov 2014. I am on 200mg of 6mp per day. The doctor says I am in remission but I am having strong to almost severe muscle pain, weakness and fatigue. Can these symptoms be related to Crohn’s Disease?
A: Thank you for your question. The symptoms that you describe are not specific to Crohn’s disease and can be seen with many other disease processes and medications. If a thorough evaluation that may include some combination of endoscopic evaluation (i.e., colonoscopy), imaging, and labs has been done to confirm Crohn’s disease remission, then it may be reasonable to evaluate if the dose of the 6-MP is appropriate. This can be done through lab work.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I have Crohn’s and currently on Entocort. Is Entocort a good option for lifetime care for Crohn’s?
A: Good question. Entocort has been studied in Crohn’s disease for up to one year but not beyond. According to these studies, it appears to be most effective within the first 3 months and less effective afterwards. However, some patients may do well on entocort beyond 3 months. The key is regular follow-up with a gastroenterologist with routine labs, colonoscopy, and perhaps imaging evaluating for active intestinal inflammation. During these evaluations, if there is any evidence of nonresponse to entocort or progression of inflammation, an adjustment to your therapy can be made early.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2015
Q: I have had an ileostomy for Crohn’s disease for 30 years. At the time of the surgery, my rectal stump was left. I have had several other surgeries since for endometriosis and have problems with adhesions. For the past 5 years, I have been well but surgeons want to remove my rectum because of the cancer risk. I have read conflicting statistics as to the cancer risk of rectal Crohn’s disease after 30 years. What is the risk of rectal cancer?
A: Any of the intestine affected by Crohn’s disease is at risk for developing Crohn’s disease, and out-of-circuit diseased rectum develops cancer in approximately 10% of cases after 15 years of follow-up. And, the longer the rectum remains in place, the greater is the risk for cancer. Accordingly, it is recommended that the unused rectum is inspected and biopsied every year to detect any precancerous or cancerous changes. If these changes are noted, the rectum must be removed. If the rectum can no longer be endoscopically evaluated because of a narrowing, or stricture, its removal is usually advised if adequate surveillance has not been performed for more than 5 years.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
January 2015
Q: Since my ulcerative colitis was diagnosed, I have been given an ileostomy and had it removed three times. I was told in 2007 that my current ileostomy would be permanent. I recently went to a new surgeon who told me it was possible until he saw my records and said I have too much scar tissue. How long does scar tissue persist in the abdomen after these surgeries?
A: Intra-abdominal adhesions are commonly seen in anyone who has undergone prior abdominal surgery. These adhesions begin to develop within 7-10 days of surgery and continue to increase for a period of time. The body then starts to dissolve these adhesions until they no longer disappear, and this usually occurs 6-12 months after surgery. Any adhesions that remain after that time interval are likely permanent.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
January 2015
Q: I have problems with scar tissue following repeated resections of my intestine. I have lost half of my colon and quite a bit of ileum. This will be my fourth surgery. Will a low residue diet keep me from requiring an operation?
A: Intra-abdominal adhesions cause difficulties in a minority of patients. When problems do arise, they are typified by bouts of cramping pain, nausea, abdominal distention, and a change in bowel habits. Patients with Crohn’s disease can experience similar complaints when active disease affects the small intestine. It is important to distinguish between symptoms caused by adhesions and Crohn’s disease because the treatment is markedly different.
An operation is currently the only way to disrupt symptomatic adhesions, but carries the risk of additional adhesions and is avoided when possible. A partial obstruction can sometimes be overcome with a low-residue diet because the foods in this diet are more easily broken down into smaller particles and contain less than 10 to 15 grams of fiber each day. Foods included in a low-residue diet are cooked vegetables, fruits, meats, and white breads. Raw vegetables, beans, legumes, nuts, seeds, and whole grains are avoided.
With the right food choices, a low-residue diet contains an adequate amount of nutrition, but some supplements (calcium, folic acid, vitamin C) are recommended if the diet is followed for an extended period of time.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2014
Q: I had a resection of the terminal ileum for Crohn’s disease in 1967 and now have a very small tight anastomosis. Would an elective resection be beneficial at this time? I am 76 and fearful of blockage?
A: These blockages can be sometimes managed with dilatation using a colonoscope, especially if they are less than 2 inches in length and not associated with any abscess or fistula. If this approach is unsuccessful or inappropriate and the stricture is causing symptoms, an operation can be performed to remove the segment of narrowed intestine. Strictures caused by scarring without associated inflammation are usually unresponsive to medications.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2014
Q: I’ve had three ballon dilations in the last 14 months and they usually last 6 months or so. I’ve been on Humira for almost two years with no side effects. I have a stricture that really makes me constipated. My gastro said my intestines are free and clear of any inflammation but it's just the stricture. He said there are no other options except a colostomy? I find that hard to believe. Is he correct? What about anoplasty flap?
A: Crohn’s disease can cause structuring anywhere along the intestinal tract including where the rectum meets the muscles that provide control over bowel motions. A stricture at this level is generally treated with dilatation sometimes in combination with steroid injections into the site. The patient is then encouraged to use products that promote a well-formed stool that acts to dilate the area as it passes through. In rare instances, the stricture can be managed by excising a short area of narrowing and reconnecting the two ends of bowel usually in combination with a temporary ileostomy or colostomy. An anoplasty flap is generally not appropriate because the stricture is not close enough to the skin surrounding the anus to allow such an operation to be successfully performed.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2014
Q: I was diagnosed crohn's (jejunum) following diagnostic laparoscopy that ended with removal of 11" of small intestine. I was to start on Remicade three months post surgery. I am still on a liquid diet and having pain and bloating. Drs. are backing off because they can't "see" the area to assess/monitor. Pill camera patency pill failed again. During surgery, the surgeon saw more extensive damage, but could not remove it all. What other measures can they use to confirm the pathology report?
A: The segment that was removed should provide ample material to confirm a diagnosis of Crohn’s disease. Imaging studies such as CT or MR enterography can be used to visualize the remaining small intestine as can some forms of advanced endoscopy.
Your symptoms may be caused by extensive inflammation in some of the remaining small bowel. If this disease cannot be managed with medical therapy, surgical treatment can be employed whereby the involved segments can be widened without removal of any intestine using a procedure called a strictureplasty. Operations in these more complicated scenarios are sometimes best performed by a surgeon experienced with the surgical treatment of Crohn’s disease.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
July 2014
Q: I was diagnosed with Crohn's Disease 17 years ago. The first 12 years were ok with, rarely a flare up. The past 4-5 years I've been experiencing many flare ups and problems. In October 2013 I had an Ileostomy surgery. Then last month a surgery to remove 1 foot of intestine. There were plans to reconnect but Dr. was unable to reconnect as there was too much inflammation. Therefore another surgery is planned. I’m worried about all these surgeries. What are the risks of so many surgeries?
A: Any operation on the abdomen is associated with risks during the immediate period following the operation as well as the long-term risk (5%) for blockage of the small bowel secondary to scar tissue creating adhesions. The small intestine is responsible for absorbing nutrients from the foods we consume, and an adequate length of small bowel is needed to ensure that an oral diet can maintain a healthy state of nutrition. In patients with Crohn’s disease, repeated operations to remove segments of the small intestine can result in a condition called short-bowel syndrome that sometimes requires TPN to supplement the patient’s nutrition by direct delivery of nutrients into the blood stream. Although operations for Crohn’s disease are generally avoided unless medical therapy is deemed inappropriate or ineffective for a variety of reasons, several procedures such as strictureplasty can be used as an alternative to removal of the small intestine in an attempt to prevent the development of short-bowel syndrome
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
June 2014
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex.. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2014
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex.. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2014
Q: I am scheduled to have 5 cm of my ileum removed, which is very small compared to what many people have removed! However, I learned that they are going to remove my appendix at the same time. Why? Is that necessary? What if down the road we find out it is good for something?
A: The last segment of the small intestine (terminal ileum) leads into the first part of the large intestine (cecum) and the junction between the terminal ileum and cecum is called the ileocecal valve. Crohn’s disease commonly affects this terminal ileum and/or cecum. The appendix arises from the base of the cecum and its role is poorly understood.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
June 2014
Q: I had surgery to remove my colon in 2000. Should I be supplementing my diet with vitamins? if so, which ones?
A: The food we ingest passes from the stomach into the small intestine (duodenum, jejunum, and ileum) before entering the large intestine (colon and rectum). The small intestine is responsible for absorbing most minerals and vitamins from the food we eat, and this process transfers these important substances from the bowel lumen to the bowel wall where the minerals and vitamins enter a network of blood vessels draining into the liver.
The principal role of the large intestine is to remove water and electrolytes from liquid waste to hydrate the body and produce solid waste. The large intestine also absorbs vitamins that are created by the colonic bacteria, such as vitamin K, vitamin B1 (thiamine), vitamin B2 (riboflavin), and vitamin B12 (cobalamin). However, the bulk of these vitamins are absorbed in the small intestine through normal processes.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
June 2014
Q: My son was diagnosed in 2013 (at age 5) with ulcerative colitis. He had his colon removed in June 2013 and has an ileostomy bag. Dr.'s would like to do the j-pouch surgery on him, but I am very skeptical. How would I find parents of children my son's age that have ileostomy bags and going through similar situations? I see parents of much older children, but not younger ones. I am a single mother trying to deal with this all alone and I feel lost and overwhelmed.
A: While the decision to have j-pouch surgery is ultimately left for the gastroenterology and surgical experts, the CCFA is a wonderful resource to connect with other patients/parents with similar experiences. Speaking with the treating surgeon and IBD gastroenterologist may also provide patients/parents to exchange experiential stories. While IBD is a challenging disease at any age, younger children can often adapt quite well even to surgery, especially when the adults around them are able to make them feel comfortable about themselves. This positive adaptation is likely a result of a still formative self-identity in early years of life which is especially responsive to environmental influences, especially parental reactions. If the child does seem frightened, angry or depressed about having IBD or surgery, a few sessions with a behavioral specialist can be helpful to help teach coping skills often using play therapy techniques.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
April 2014
Q: I have had several surgeries. I have had a colostomy/ileostomy and a Hartmann’s pouch since 1989. Just recently, I am having a discharge from my rectum several times each day, and my doctor has no answer. What is causing this? Prednisone seemed to help, while I was on it for two weeks … any ideas?
A: The bowel lining is called mucosa because it secretes mucus. Patients who undergo creation of a colostomy or ileostomy without removal of the rectum can intermittently pass this mucus. Some people will pass mucus a few times each day while others will rarely discharge any mucus; most patients’ frequency is found to occur somewhere between the two extremes. The out-of-circuit bowel can also be inflamed secondary to the patient’s underlying disease or lack of mucosa nutrients normally contained within the waste. This inflammation can cause passage of blood tinged mucus that is usually of little clinical significance.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
April 2014
Q: Does a CT-Scan show Polyps and diverticulitis?
A: CT imaging of the abdomen and pelvis can show either polyps or diverticulitis. A special imaging technique called CT colonography generates three-dimensional images to examine the inside of the colon that is otherwise only seen with colonoscopy. CT colonography is merely a diagnostic procedure, and a colonoscopy is required to remove any identified polyps. CT colonography is sometimes unable to differentiate stool from smaller polyps and may not be as reliable as colonoscopy. Lastly, CT colonography is generally not recommended for patients who have active Crohn's disease or ulcerative colitis because of an increased risk of perforating the colon.
Standard CT imaging is used to diagnose diverticulits, which represent an inflammatory complication of pre-existing diverticulosis.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
May 2013
Q: Do people ever gain weight after colonectomy surgery?
A: Patients’ weights can respond differently to having their colons removed. For example, patients who have taken steroids for an extended period of time often experience weight loss after their colon surgery because they are able to successfully discontinue their steroid therapy. Similarly, patients kept inactive secondary to their disease may lose weight after the affected bowel is removed because they can resume more vigorous activities after recovering from surgery. On the other hand, patients whose diet or caloric intake was limited by their disease, will often gain weight after their colectomy because they can return to a more healthy diet that enables their bodies to rebuild.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
February 2013
Q: I have been going through some rough flares recently and am so tired all the time. I used to go to work with initiative to accomplish goals and be successful in what I do. Now I just do not care. I know that I am blessed to have a job, but struggling with this disease has taken away my drive for work, exercising, and even spending time with my family. Do you have any advice on how to get the drive back?
A: Fatigue is a very common problem in patients with IBD, both during disease flares but also during times of remission. This fatigue can come with poor sleep, low energy, and depression, if symptoms become severe enough. Sleep disturbance is common in patients with IBD, and there are several potential reasons for this, one of which is that the inflammatory substances in the gut may also have an impact on the brain. Medications used to treat IBD affect sleep, especially steroids. If poor sleep is contributing to the symptoms you describe, there are things you can try to get better sleep. These techniques, sometimes called ‘sleep hygiene,’ include setting a specific schedule and being very consistent in sleep and wake times. People who sleep the best often engage in relaxing activities before bedtime, rather than watching violent TV or movies that can arouse people. It is important to get all of your sleep at one time, and you should avoid napping during the day, especially if you find yourself tossing and turning at night. People are encouraged to avoid alcohol, as this can worsen the quality of sleep and make it less refreshing.
When “drive” is low, a jump start is often needed, and the longer you remain ‘stuck in a rut,’ the harder it can be to break out. However, just like bad habits can breed more bad habits, good habits can lead to more good habits and help you to break out of your low motivated ‘funk’. Scheduling your day (and sticking to it!) can be very useful with this, and I would encourage you to detail your activities for the week. Be very specific and build enjoyable things into your schedule (exercise, time with family), as well as things that you have to do (work). The longer you can stick to this routine, the easier things become. Sometimes, low motivation and poor sleep may be signs of depression or other mental illness, so if your symptoms are going on for more than two weeks, it is worth discussing with your physician as you may require more help
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
February 2013
Q: My wife just up and left me 4 weeks ago and my stress level is at an all time high. I feel like I'm having a breakdown and my stomach has been in constant turmoil. I tried now for 4 weeks to tough it out and let myself heal emotionally the natural way, but it just isn't working. Any advice would be greatly appreciated on how to deal with the stress and managing my Crohn’s disease.
A: Life stress, especially the loss of a relationship, has been linked with worsening gastrointestinal symptoms in patients with IBD. This is thought to be due to the strong connection between the gut and brain, especially the areas of the brain that regulate our emotions. Though I’m sorry to hear about your recent break-up, there are several things you can do to decrease stress and help yourself feel better during this challenging time. First, it is very important to get back to activities that are enjoyable for you, even if it is difficult to force yourself to do them. When we relax or find pleasant diversions, it gives our brains a rest from processing the stress. Taking 10 minutes a day to focus on relaxation can be effective in decreasing stress. One breathing exercise involves deep slow breathing…counting to 4 while breathing in through your mouth, holding it for 4 counts, and letting the breath out through your mouth over 8 counts for 10 breath cycles can decrease stress. Second, finding the company of trusted friends is especially important when dealing with stress, as positive social interactions have been shown to decrease the stress response that affects the gut. Finally, if stress is chronic or extreme, it can through a switch in the brain causing an emotional reaction to become a more clinically significant depression or anxiety disorder which can benefit from the services of a professional therapist or counselor. Letting your gastroenterologist know about your life stress is a good place to begin.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
February 2013
Q: I was recently diagnosed with Crohn's although I've probably had it for years and didn't know it. Being told you have what is a lifelong disease that will never be cured, and will likely only get worse and may lead to surgical removal of parts of your intestines is really like being continually smacked in the face. How exactly do you accept that, I mean truly accept it? Where do I start?
A: The first place to start is to give yourself permission to have a reaction and to know that it is normal to have a range of responses when diagnosed with Crohn’s disease, something unexpected and life-altering. It is natural to go through some type of grieving process about the loss of health, similar to how people react to the loss of a loved one. The responses involved vary among individuals. Some people get sad, others get angry but there is no right or wrong way to grieve. What is important is that you recognize your feelings and remind yourself about other difficult challenges you have adjusted to in the past. Although the passage of time is the best healer, there are active steps that have helped others with Crohn’s disease accept their diagnosis. Talking about it with others is a good first step whether it is good friends or family or through a CCFA support group or activity. Some patients find it helpful to journal about their experiences as a way to work through the emotions. Others find it useful to focus on other aspects of their lives that they can control. For example, thinking about three positive things in your life or three small tasks or steps you will achieve that day. Finally, others have found that “finding the silver lining” about a situation (i.e., something positive or something that could be even worse by comparison) helps them feel better. In fact, many studies show that optimistic thinking can positively influence how well your body copes with the disease and how well your immune system responds to the medications or your gastrointestinal tract heals from surgery.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
January 2013
Q: I have a ileostomy bag that was supposed to be reversed after six months, but never was (had surgery in 1998). The surgeons says that I can’t get the surgery to reverse the bag cause it’s been too long of time. Is that true?
A: The issue of whether an ileostomy can be reversed is based on several features that are unique to each individual patient. These issues include the initial reason for the ileostomy and the condition of the bowel that has been unused. If the ileostomy was created because the unused bowel was diseased, the ileostomy can only be reversed if the previously diseased bowel is removed and the remaining unused bowel is healthy and functional. Alternatively, if the ileostomy was created to protect a surgical site created in previously non-diseased bowel, the ileostomy can be reversed if the remaining unused bowel is healthy and functional. In either situation, recovery from reversal of the ileostomy may be more difficult and prolonged if the ileostomy has been in place for a long period of time.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I have Crohn's and am almost always extremely dehydrated - eyes so dry I can't blink, finger tips puckery, mouth dry no matter how much water I drink. Is this from Crohn's? What should I do?
A: Dehydration can be caused by a number of disorders and can also be associated with electrolyte imbalances. We lose water through many routes including moisture in our breath as well as water in our stool, sweat, and urine. It is important to maintain an appropriate intake of fluids such that you urinate at least 4-6 times each day. You can also look at the color of your urine. If your urine is a light yellow to clear, this can indicate you are adequately hydrated. Some patients with Crohn’s disease suffer from watery diarrhea that diminishes their water and electrolytes. These persons should work with their physicians to manage the diarrhea, but they should also replenish their losses by drinking sports drinks that contain both water and vital electrolytes such as sodium and potassium.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: When my Crohn's disease is flaring, I shake, or vibrate so bad it wakes me up. I'm not diabetic. Is this from Crohn's?
A: Chills or rigors are episodes of shaking or shivering that can be associated with a fever. It is an automatic response that occurs for a variety of reasons, and is often a sign that suggests inflammation or infection such as that seen with active Crohn’s disease. Shivering involuntarily occurs when someone feels cold and acts to raise the body’s temperature. The trigger point at which this response occurs is set in the brain and has been described as an internal thermostat. With inflammation or infection, chemicals called pyrogens reset the trigger temperature. This in turn tricks the body into feeling cold and shaking occurs to raise the body’s temperature.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I was diagnosed with Crohn's about a year ago and by most markers/symptoms I'm in remission yet continue to have periods of fatigue that I didn't have prior to my diagnosis. Is it common/normal to struggle with tiredness even though in every other way I'm fully in remission?
A: Fatigue is a symptom commonly seen in patients with Crohn's disease symptom and can exist for several reasons. While a flare of Crohn’s disease can cause someone to feel fatigued as his or her body is fighting inflammation, fatigue can also occur when the disease is in remission for other reasons such as anemia, depression, or medications. Anemia linked to the decreased production or gradual loss of red blood cells is commonly seen in patients with Crohn’s disease and can lead to fatigue. Chronic diseases such as Crohn’s disease are also often accompanied by emotions such as sadness or depression, and these disorders can cause fatigue. Lastly, fatigue can be a side effect associated with certain medications used to treat Crohn’s disease such as methotrexate, sulfasalazine, and steroids. Any feelings of fatigue should be discussed with a physician so he or she can look for the cause and recommend appropriate treatment. It is also suggested that patients with fatigue eat a healthy diet, exercise on a regular basis, and get an appropriate amount of sleep each night.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is cause and treatment for black stool?
A: Black stools can occur for a variety of reasons in patients with Crohn’s disease and appropriate treatment depends upon the cause. Certain medications such as iron and bismuth or particular foods that are blue, black, or green colored can also cause black stools. More importantly, black stools can occur because of slow bleeding from inflamed bowel lining; the red blood turns the stool black as bacteria in the stool interact with the blood. The source of bleeding is usually located in the stomach, small intestine, or right colon. Bleeding closer to the rectum or anus more commonly causes the stool to be red instead of black. It is important to discriminate between black stools caused by medications and foods versus bleeding from the bowel wall. This symptom, especially if it is new in onset and persistent, should be reported to a physician so that proper evaluation and treatment can be initiated.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is the best way to diagnose an adhesion in the small bowel? Should you use small bowel X-Ray series, CT Scan, MRI, and/or colonoscopy?
A: Small bowel adhesions are commonly seen in anyone who has undergone prior abdominal surgery, but adhesions cause difficulties only in a minority of patients. When problems do arise, they are typified by bouts of cramping pain, nausea, abdominal distention, and a change in bowel habits. Patients with Crohn’s disease can experience similar complaints when active disease affects the small intestine. Colonoscopy cannot generally identify small intestine adhesions because the procedure inspects only the inside and not the outside of the large bowel. Imaging studies such as MR enterography and CT enterography are usually more accurate than a small bowel series in their evaluation of the small intestine. However, none of these tests can easily see adhesions. Instead, they identify the consequences of these adhesions such as an abrupt angling or abnormal dilation of the involved bowel. One benefit of MR enterography over the other modalities is that no radiation exposure is required for the test.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is ulcerative enterocolitis and what part of the small and large intestine is involved? Is it more extensive or serious than pancolitis?
A: The inflammation associated with ulcerative colitis typically begins in the last part of the large intestine and then spreads up the bowel to sometimes affect the entire colon; this complete or near-complete involvement of the large intestine is called pan-colitis. Ulcerative colitis does not usually impact the small intestine unless it is limited to the last few inches in a condition called backwash ileitis.
More extensive inflammation of the small intestine is called enteritis and it is not seen in patients with ulcerative colitis unless they have another disorder such as an infection superimposed on their existing ulcerative colitis. On the other hand, patients with Crohn’s disease can demonstrate inflammation of both the small and large intestine and this is referred to as enterocolitis.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: Should recurring C Diff in a child be a cause for concern? Say recurring 3 times in 2 months and after taking antibiotics?
A: Clostridium difficile is a bacteria that can cause inflammation and diarrhea in pediatric or adult patients without or with inflammatory bowel disease. Although proper studies are still lacking, some evidence suggests that people with inflammatory bowel disease are at greater risk for infection with Clostridium difficile than those without disease.
The initial treatment of Clostridium difficile in children can fail more than one-half of the time, regardless of the treatment. This failure might occur because the bacteria is resistant to standard therapy or the patient is a carrier of the bacteria. Carriers can be asymptomatic for months without treatment of the bacteria, but it is unclear whether they will remain so if immunomodulator or biologic agent therapy is initiated for the inflammatory bowel disease.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: My daughter has Crohn's disease and she won't have a bowel movement for a couple of days and then when she does it is very painful and hard to get out. The stool is soft in consistency and is sometimes flat. We have tried laxatives and stool softeners but they just seem to make her go more often, but still painful and difficult to get out. She had normal bms after an increased dose of infliximab, but that only lasted 2 1/2 weeks (tests show no antibodies to the biologic). What can we try?
A: Crohn’s disease can affect any portion of the intestine from the roof of the mouth to the skin around the bottom, which is also known as the anus. Difficult or painful bowel motions can be caused by disease-related disorders such as narrowing, fissures, or ulcers of the anus. Infliximab can be beneficial in treating some patients with disease of this area. Any patient with these symptoms should generally be thoroughly examined and this examination must frequently occur in the operating room because it is too uncomfortable to perform in another setting. Further treatment would be based upon the findings of this examination.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I have been on adalimumab for 2 years with great success. During this time I have gained about 30 lbs, been diagnosed with high blood pressure, and high triglycerides. Are these side effects of the adalimumab?
A: Adalimumab has been extensively used for a variety of conditions and its side effects are fairly well described. Comparing patients receiving adalimumab to those not getting adalimumab, high blood pressure occurred in 5% of people receiving the medication and 3% of the others. High lipids were seen in 7% of patients treated with adalimumab and 5% of those not using the medication. Excessive weight gain is not typically seen as a direct result of the drug.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I am 64 years old and have had Crohn’s/Colitis for 40 years. I have had a flare and am now taking 6MP with 5 mg prednisone. I feel that I am stable. Are there long term effect of continued use of either the 6MP or the 5 MG of prednisone?
A: Azathioprine and 6-mercaptopurine (6-MP) are immunomodulators that are chemically similar and generally used to maintain remission in Crohn's disease as well as ulcerative colitis. Both medications have a slow onset of action (3-6 months for full effect). Reported side effects associated with their usage include diarrhea, headache, nausea, and vomiting. Exchanging the drugs can occasionally reduce some of these reactions. Fever, joint pain, liver inflammation, mouth sores, and skin rash are unlikely to be affected by switching the medications. Less common side effects include inflammation of the pancreas, also known as pancreatitis, and bone marrow suppression that may increase the risk of infection or serious bleeding. Because of these effects, blood tests should be frequently performed to measure the impact of these drugs on the bone marrow, kidneys, and liver. Some reports have described an increased risk of lymphoma, which is a type of cancer affecting the lymph glands. However, other research has shown that for most people the extra risk is small and outweighed by the potential benefits gained from treatment.
Corticosteroids similar to prednisone are naturally present in the body, but the higher than normal dosages commonly needed to control inflammation can produce undesired effects. These side effects usually disappear when the medication is reduced to normal dosage levels (Prednisone 5 mg daily) or discontinued. However, the impact of long-term steroid usage is sometimes irreversible and these changes include cataracts, diabetes, easy bruising, and glaucoma. Furthermore, the body’s natural ability to produce hydrocortisone might fail to recover when the medication is stopped after many months or years of steroid treatment.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I was diagnosed with Crohn’s just a few months ago. I took prednisone first then mesalamine, but am still experiencing symptoms. The doctor now wants to move me to biologics, but I want to move more slowly and first try increasing the dosage of the mesalamine. If that doesn't work, what would the next step be?
A: Patients with Crohn’s disease can be managed with multiple classes of medications including antibiotics, aminosalicylates (such as mesalamine), corticosteroids (such as prednisone), immunomodulators, and biologic agents. With the exception of corticosteroids, most of these medications can be prescribed on a long-term basis. Some clinicians prefer to start patients on the most mild of medications and escalate the potency of treatment only if the disease fails to respond to therapy. Others begin with the strongest drugs and then transition to lesser medications when the disease has been adequately controlled.
If your disease was initially managed by a corticosteroid, but you relapsed while on an aminosalicylate, you would be a candidate for corticosteroids or biologic agents. Immunomodulators would be likely used in combination with the corticosteroids so you could be eventually weaned off the steroids and continued on the immunomodulators in order to maintain the steroid-induced remission. Disease remission achieved with biologic agents can be maintained with long-term biologic agent usage or you can be transitioned to less potent medications for long-term therapy.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
Diet & Lifestyle
June 2022
Q: After being diagnosed at 78 years old with acute colitis - the hospital and GI Doctor recommended a low fat diet. They did not set me up with a nutritionist or give me a guideline for foods. I still have a lot of gas even with just keeping my diet simple. I know I do fill up with gas if I don't eat every 4/ 5 hours after breakfast/lunch and dinner. Are there some recommendations on diets to follow or go to foods to limit gas?
A: Excessive gas could be due to numerous causes including active inflammatory bowel disease or dietary intolerances. Gas in your stomach can be caused by swallowing air when you eat or drink via drinking through a straw, consuming carbonated beverages (soda, beer), eating too quickly, or chewing gum. Limiting these behaviors and practicing regular, mindful eating may help reduce symptoms. Certain high-fiber foods may also cause gas, including beans/ peas (legumes), raw fruits and vegetables (especially those with intact seeds and skins), and certain whole grains. Sugar substitutes, or artificial sweeteners, such as sorbitol, mannitol and xylitol, found in some sugar-free foods and beverages may also cause excess colon gas. Due to the fact that various medical conditions may increase intestinal gas, bloating or gas pain, I would recommend discussing potential underlying causes with your medical provider that way you can obtain more tailored recommendations for a potential diet plan for your inflammatory bowel disease or food intolerances.
For further help finding a qualified registered dietitian nutritionist or food and nutrition practitioner who is right for you, check out: Find a Nutrition Expert (eatright.org)
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: Do you have any recommendations on how to help my child get the proper nutrition while also adhering to a special diet? I find it hard to get fruit and veggies in to his diet.
A: Some additional strategies to incorporate fruit and vegetable intake include “sneaking” them into dishes and using preparation strategies that could improve tolerance (as allowed on your child’s special diet): fruit/vegetable smoothies, juicing, pureeing vegetable soups, cooking rice in vegetable broth, baking fruit muffins, etc. When following a limited diet plan, it is key to get tested regularly for vitamin and mineral deficiencies and supplementing as needed. It is oftentimes recommended to take a multivitamin with additional vitamin and mineral supplementation as needed. Additionally, if overall intake and appetite are limited it can also be helpful to find an oral nutrition supplement drink such as Kate Farms or Pediasure to help fill in the gaps.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: Hello, my husband has UC and finds it difficult to adhere to specific diets. Anything that you find helps with people who have to eliminate so much from their diet?
A: Following elimination based diets can be challenging but finding additional recipes, eating out strategies, or meal delivery services that can assist with food prep can be helpful. Below are some helpful resources for structured elimination based diets, a recipe database for those with dietary restrictions/allergies, and meal delivery services.
Food Allergies: Safe Eats® Allergy-Friendly Recipes – Kids With Food Allergies
IBD- AID: https://www.umassmed.edu/nutrition/ibd/ibdaid/
SCD: https://www.nimbal.org/ https://gikids.org/
FODMAP: Hundreds of Low FODMAP Recipes & Resources | FODMAP Everyday Low FODMAP Diet | IBS Research at Monash University - Monash Fodmap
AIP: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/ https://autoimmunewellness.com/
CDED: https://mymodulife.com/
Meal Delivery: Daily Harvest, Hello Fresh, HungryRoot, Epicured
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
June 2022
Q: I have had a full colectomy for my UC. I'm now experiencing some inflammation in my J-Pouch and my lower intestine. I'm currently treating with steroids but would like to also try an anti-inflammatory diet as well. Have other patients had much luck with this diet? Also, I was advised not to eat nuts after my colectomy but opinions vary. Have others been able to digest almonds or cashews post colectomy?
A: Inflammation in the lower intestine (or pouch) is common but really depends on multiple factors or why that is happening. We don’t have the best evidence for diet therapy in people with J-pouches, and there is argument whether there are diets that are truly “anti-inflammatory” to your bowels. While there are foods that people tolerate differently (nuts, seeds, fatty foods), I don’t usually have diet restrictions for my post-colectomy patients. While some things can perhaps cause more diarrhea, they don’t necessarily cause the inflammation. I would recommend speaking to your doctor prior to making any changes.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2022
Q: I was diagnosed with Crohn’s disease 10 years ago. I’m on my 3rd biologic medication (Stelara). I’ve had a small bowel resection in 2016. I am having trouble keeping my vitamin levels up where they should be. I feel like this is a huge factor in my hair loss. I’m on a daily multi-vitamin, Vit D supplement daily and B12 shot monthly. Looking for ways to get extra vitamins into my diet. Would it be helpful to use dietary supplement drinks such as teami or orgain?
A: While supplement drinks such as Orgain can be a valuable way to receive additional nutrition, depending on the extent of your small bowel resection and current Crohn’s disease inflammation, your ability to absorb nutrients may be limited. I recommend discussing these concerns with your doctor and/or dietitian to have your vitamin/mineral levels checked and what might be best to supplement with (in the dose you need and form that you can absorb and tolerate best).
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2022
Q: I am a distance cyclist and ride over 7000 miles annually. I've been fairly recently diagnosed with UC. I feel that riding is therapeutic for me and really enjoy day long rides. I've always had difficulty staying hydrated it seems. Also, I utilize an electrolyte drink, and frequently consume sugary gels and snack bars to maintain my energy....I'm wondering if these foods exacerbate my condition and since UC is inflammatory in nature, is my inflammatory response from exercise contributing?
A: UC primarily affects the colon, which has the primary responsibility of removing water, some nutrients, and electrolytes from partially digested food. Concentrated beverages high in excess sugars draw water and electrolytes into the gut, making stools loose and unformed, and without the colon fully functional in the case of UC, this can lead to further electrolyte and fluid losses.
Your body absorbs fluid best when there is a certain ratio of sugar to salt to water. Oral rehydration solutions take full advantage of that ratio and could help keep you hydrated while biking. Ready to use products include Liquid IV, Drip Drop, and Pedialyte. A homemade recipe includes using 4 cups of G2 or Powerade Zero with ½ teaspoon of salt.
I would suggest discussing what medical limitations may or may not exist given your active disease status in terms of physical activity intensity and duration with your medical provider.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2022
Q: My 14 was just diagnosed with Crohns and it was pretty bad. He is on remicaid but has also suggested a diet in which half of his calories come from a “formula” such as boost or ensure. We are very concerned that boost and ensure have added ingredients and sugars that might not be so healthy. I have recently been looking at organic protein based powders. I sampled one today from a company called Orgain and I very much enjoyed it but wanted to be sure it met all of the requirements we needed.
A: Partial enteral nutrition is a treatment for IBD. Formula provides 30 – 50% of a patient’s estimated calorie needs. It can be used with medication to inducing remission. Patients consume formula and take solids generally while taking medication. Studies have shown that the formula used does not have to be elemental or peptide-based. The protein source from the recommended formula can be intact. Orgain and Kate’s Farms have intact protein and could be used.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
December 2021
Q: I was diagnosed with crohn's in 7/2020. I find that if I eat broccoli, cauliflower, winter squash, sweet potato, the consistency of my bowel movements changes. I'm just wondering if this is normal. Is it that my system can't handle the fiber in these vegetables? I have no problem with cooked stringbeans, zucchini, yellow squash or carrots.
A: We know that various foods can increase symptoms of gas, bloating and change bowel consistency. If you aren’t having any other symptoms than change in bowel consistency (assume you mean diarrhea) and you are tolerating this without dehydration it might just be the nature of your body’s interaction with these foods. Often times people can tolerate cooked vegetables better. It would be important to know if you have any stricturing of your intestine as raw uncooked vegetables can sometimes be problematic.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
October 2021
Q: How does one find the proper nutrition plan when you have Crohn’s & Hashimoto’s. Not only that but I have issues digesting meat, I’m gluten sensitive, lactose intolerant & I was first diagnosed w/ IBS-C (emphasis on C) I’ve gone in circles for 6 years trying to figure out the nutrition by myself & my brain is fried. I’ve also done the autoimmune protocol several times & now I’m here.
A: Nutrition therapy for people living with inflammatory bowel disease is not a “one size fits all” approach. What might work well for one individual might not work for another which is what can be quite frustrating for patients searching for a diet plan. Due to your underlying gluten sensitivity, IBS, and lactose intolerance, it might be helpful to focus on whole foods. Some Crohn’s disease patients have had success with whole food-based diets such as the Crohn’s disease exclusion diet. It models some of the components of the autoimmune protocol but is not as restrictive up front and serves as a maintenance versus elimination- based diet. The whole foods approach aims to reduce exposure to foods thought to cause intestinal inflammation, change the microbiome, alter the mucous layer in the gut, or change intestinal permeability. This diet includes fruits, vegetables, meats, complex and simple carbohydrates. If animal- based protein is difficult for you to tolerate, plant-based protein sources could serve as an alternative. This diet plan avoids gluten, gluten free baked goods, dairy, animal fats, processed meats, products containing emulsifiers, canned goods, and packaged products with an expiration date. To promote bowel regularity in the setting of IBS-C, it might be beneficial to discuss adding in fiber, additional hydration strategies, or probiotic supplementation with your medical team. Finding an outpatient dietitian specializing in IBD care could also serve as a helpful resource for tolerance follow up.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
October 2021
Q: I have Crohn's disease and have already had two surgeries. I am currently taking Stelara every 6 weeks which is not strong enough. So my doctor has added Budesonide. I am still having problems even though I take both these medications and eat basically grill chicken and salads. I can not figure out what options I have when it comes to what to eat. I am getting burnt out on grilled chicken. Can you help with some different food options?
A: Some general recommendations to help include seeing a dietitian with expertise in IBD, getting tested for vitamin/mineral deficiencies and discussing ways to supplement with your healthcare team, drinking plenty of fluids, keeping a food journal to pinpoint problem food items, and trying to slowly increase dietary variety. While everyone’s IBD is different, these are some of the most commonly reported “problem” foods for individuals with active IBD: foods high in insoluble fiber, foods with sugar, artificial sweetener, and sugar alcohols, lactose rich foods, “gassy” cruciferous vegetables and uncooked vegetables/fruit, high fat/greasy/fried foods, caffeine, and alcoholic and carbonated beverages. Some potential foods to include during a flare include: diluted juices, smoothies, pureed vegetable soups, applesauce, canned fruit without added sugar, banana, pumpkin, oatmeal, cream of wheat, plain chicken, turkey, or fish, cooked eggs or egg substitute, mashed potatoes, rice, or noodles, white bread, and oral nutrition supplements. In general, eating smaller, more frequent meals may also be helpful.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
September 2021
Q: Hello, I was just in the hospital a few weeks ago. The doctor diagnosed me with Colitis and my questions is "What diet would you recommend?". I am writing down what I eat, but it's minimal since now I'm afraid to eat. I cut out meats, coffee, hot sauce and alcohol. What vegetables are ok to consume and which do I avoid? I appreciate any feedback.
A: Deciding what to eat and recommending what to eat can be challenging for those with IBD. Since everyone’s IBD is different, there is no one single diet or eating plan that will work for everyone with Crohn’s disease or ulcerative colitis. Dietary recommendations must be tailored just for you – depending on what part of your intestine is affected, what symptoms you have (such as, diarrhea or constipation), the status of your disease, whether you are in remission or having a flare, as well as the presence of any nutrient, vitamin, or mineral deficiencies which your team can assess. Seeing a dietitian with expertise in IBD can also help with this assessment. While everyone’s IBD is different, these are some of the most commonly reported “problem” foods for individuals with active IBD: foods high in insoluble fiber, foods with sugar, artificial sweetener, and sugar alcohols, lactose rich foods, “gassy” cruciferous vegetables and uncooked, raw vegetables/fruit (especially those with tough outer skins or seeds), high fat/greasy/fried foods, caffeine, and alcoholic and carbonated beverages. Try slowly introducing new food items, even one at a time and eating small, frequent portions (i.e. 5-6 smaller portions if 3 big meals per day is difficult). Keeping a food log like you describe of what you eat and how you feel can be a helpful way to figure out what diet might work best for you as the best diet is one that meets your nutritional needs, while helping you better manage your IBD symptoms.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
September 2021
Q: I am recently diagnosed with UC but have had flare ups for the past year. I had a gastric bypass 7 months ago and did not have any UC symptoms until 5 months in and am in a nasty flare now. I have been researching different diets (SCD and Low FODMAP) but there are several parts that contradict my weight loss surgery diet. How do I find the right diet for me and are there online resources available to help? Is there anyone that specializes is both WLS and UC?
A: The low FODMAP focuses on reducing FODMAP carbohydrates which can be poorly absorbed in the small intestine and thus may be broken down and fermented by your microbiome producing excess fluid and gas. This is actually a diet that has been primarily studied in IBS – irritable bowel – which is different than IBD. The Specific Carbohydrate Diet has been popular among IBD patients due to growing research following the book “Breaking the Viscous Cycle” as well as its structured approach. Researchers from the DINE-CD study compared the effectiveness of the SCD against the Mediterranean diet and found statistically similar rates of symptomatic remission in Crohn’s Disease patients. The Mediterranean diet may be easier to follow for some and can be less restrictive than the Specific Carbohydrate Diet which may make it preferred for patients. The post-operative bariatric maintenance diet (phase IV) aligns with most of the Mediterranean diet principles such as recommendations of lean meat, poultry, pork, and fish, low fat dairy products, low fat starches and whole grains, and cooked vegetables and fruits. If you can't tolerate 3 meals daily, 5-6 smaller meals daily may be better tolerated as well as separating liquid and solid food intake. Because following a therapeutic diet, experiencing active IBD, and having a surgical history of RYGB puts you at increased risk for vitamin/mineral deficiencies, it’s important to stay in close contact with your healthcare team to make sure you remain nutritionally healthy. The Crohn’s and Colitis Foundation has a Diet & Nutrition Page that can be a helpful resource for patients to stay up to date. A registered, licensed dietitian preferably with experience in bariatric surgery and inflammatory bowel disease should be able to tailor nutritional recommendations specifically for you and your needs.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: I’ve been reading a book Plant Paradox for patients with UC? Is a plant-based diet beneficial for ulcerative colitis patients? What are the pros and cons?
A: Most recent scientific research has focused on the semi-vegetarian diet in mostly Crohn’s disease. A small study out of Japan suggested that patients who followed a semi-vegetarian diet were less likely to experience disease relapse than those who were eating a more meat-heavy diet. There has been lesser research done on semi-vegetarian or plant-based diets in UC. There is limited data suggesting that there might be benefits to following a plant-based diet in combination with medical therapy in cases of mild UC.
It is important to note that plant-based diets are traditionally higher fiber. Since fiber is a primary fuel source for colon cells and in turn the gut microbiome, eating a fiber rich diet can have a number of health benefits. A plant-based diet can normalize bowel movements especially in constipated patients and help normalize stool in patients with diarrhea. However, tolerance to fiber sources may vary from patient to patient especially in cases of active disease. Those following a strict plant-based diet, especially vegans, may be at risk for additional nutritional deficiencies such as vitamin B12, vitamin D, calcium, and iron.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: I am a 71-year-old female and have just been diagnosed with ulcerative colitis. What would be the best multivitamin for me to take and the best probiotic? I am also diabetic.
A: While there is no one size fits all approach to IBD nutrition and vitamin/mineral supplementation, having UC does put patients at risk for certain nutrition deficiencies. Some of the more common nutrient deficiencies include folate, magnesium, zinc, iron, potassium, Vitamin D, and calcium. It is very important that before taking any vitamin or dietary supplements, that you first discuss it with your doctor or your dietitian. While most patients may benefit from taking a daily multivitamin/mineral supplement, supplementation needs vary person to person depending on medical and surgical histories, medications, and nutritional status. Identifying the best brand of vitamins and supplements is challenging because the Food and Drug Administration (FDA) does not regulate the vitamin and supplement industry, so I generally recommend products that have been USP verified and discussed with your medical team.
There are numerous live micro-organisms that may improve the balance of good versus bad bacteria in IBD including E. Coli strain Nissle 1917, Lactobacillus, Bifidobacterium longum, and VSL#3. However, it’s important to talk to your doctor before starting probiotics, especially if you are a young child, older adult, or have a compromised immune system. Dietary sources of probiotics include yogurt, kefir, miso, and tempeh.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: I have microscopic colitis and struggle with frequent diarrhea. I use OTC anti-diarrhea medications as needed. I want to take a more natural approach to controlling diarrhea. What are some foods or complementary therapies that can help control diarrhea?
A: It’s important to drink plenty of fluids to prevent dehydration such as broths/bouillon, fruit juices (diluted as needed), diluted Gatorade or G2, Pedialyte (or other oral rehydration solutions), ginger ale, and water/coconut water. Try limiting caffeinated and/or carbonated beverages, if gas or cramps occur. Try avoiding sugar alcohol (mannitol, sorbitol) containing beverages or foods if symptoms worsen or continue. Certain soluble fibers can help with diarrhea by absorbing excess water in the gut. This can be found in both soluble fiber supplements (such as psyllium) and via dietary sources. These starchy foods include items such as bananas, rice, applesauce, potatoes, white toast, noodles, and oatmeal. Avoiding insoluble fibers such as the skins, seeds, and stringy fibers of unpeeled, raw fruits and vegetables and gradually resuming consumption of higher fiber foods, once the diarrhea subsides may prove helpful. Some patients may have other underlying intolerances (such as to gluten or dairy) that could also contribute to looser stooling. It may be helpful to keep a food log to pinpoint trigger foods and eating smaller, more frequent portions throughout the day. For more tailored nutritional recommendations, ask your healthcare team about getting connected with a registered dietitian.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
July 2021
Q: The results of the DINE study indicated that both the Mediterranean Diet and SCD diets can induce remission and improve symptoms in CD patients. How do I know which diet to try? Is there a guide on how to get started with making dietary changes? Finally, will these changes need to be permanent of just when I have a flare up?
A: After six weeks the DINE-CD study showed that 43.5% of patients following a Mediterranean style diet and 46.5% of patients following the Specific Carbohydrate Diet™ achieved symptomatic remission in Crohn’s disease patients with prior mild-to-moderate symptoms on stable doses of medications. Given these similar results, it’s important to note the differences between the Mediterranean diet and Specific Carbohydrate diet. While the Specific Carbohydrate Diet has typically been popular among IBD patients due to prior research (and the book Breaking the Viscous Cycle) as well as its structured approach, public health experts often recommend a Mediterranean style diet because it has a variety of other health benefits. Researchers from the DINE-CD study also note that the Mediterranean diet is easier to follow for most and less restrictive than the Specific Carbohydrate Diet which may make it preferred for patients with CD with mild to moderate symptoms. However, there is no universal guide that will work for everyone with IBD as individual tolerance to items such as fruits, vegetables, and other fiber sources may vary and specifics like surgical/medical history, access to food, and nutritional/functional status should be accounted for. While there is no specific instruction set on how to get started, working with a trained professional such as a registered dietitian can help you put these specific dietary changes into place as well as make tailored nutritional recommendations. As of now, the DINE-CD study recommends these diets as a long-term approach to manage symptoms of IBD.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
April 2021
Q: I am 21 years old and have been diagnosed with Crohn’s this last month. I am really leaning more towards not taking any medication. Instead taking vitamins and supplements along with cannabis. I have found that helps the most. Is it necessary to take prescription medication, if I have found a way to be in remission?
A: Many patients are anxious about taking medications in the setting of a new diagnosis. A small select group of patients with very mild Crohn’s disease do not need chronic medication, but the of patients majority do. In addition, if Crohn’s is not controlled many patients on no medications known to be effective will go on to eventually have significant complications from their disease and a lower quality of life long term. Unfortunately vitamins, supplements do not have evidence of treating Crohn’s and there still not enough data to determine the impact of Cannabis positive or negative. You may be effectively treating your symptoms but the concern is that your underlying disease will progress if it is not addressed with medications or possibly well timed surgery. The idea is to intervene on your disease, prior to the disease progressing. Please discuss with your gastroenterologist if there are other medical therapies and treatment
strategies that could benefit you. In the meantime, good quality sleep, a balanced diet low in processed food, addressing anxiety and depression if present, and even adjunctive measures such as mindful meditation as adjuncts to improve your quality of care can be considered as you and your physician make decisions on treatment.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2021
Q: I was diagnosed with Crohn’s disease 10 years ago. I’m on my 3rd biologic medication
(ustekinumab). I had a small bowel resection in 2016. I am having trouble keeping my
vitamin levels up where they should be. I feel like this is a huge factor in my hair loss. I’m
on a daily multi-vitamin, Vit D supplement daily and B12 shot monthly. I’m looking for
ways to get extra vitamins into my diet. Can dietary supplement drinks help to boost my
vitamin levels?
A: Thanks for the question. Before adding additional supplements to your regimen, it may
not be a bad idea to stay on high dose Vitamin D and B12 shots for 3-6 months and then
rechecking these vitamin levels again. If you have already done this and your levels are
still low, you may need to be on higher doses of Vitamin D and other causes of B12
deficiency should be evaluated.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have been on vedolizumab for a year now and have experienced total remission from
my ulcerative colitis symptoms. However, since starting the medication I have had
nonstop bloating. I have tried countless treatments, including medication, low fodmap
diet, meditation, ibguard, antibiotics, etc. Nothing has stopped the bloating. Considering
that the bloating started around the time I started my infusions, could this be a side
effect of the medication?
A: Bloating can be a frustrating symptom. It sounds like you have gone through quite a few
different treatments for it as well. Bloating is not something we typically see with
vedolizumab. It may be time to sit down with your gastroenterologist and examine
other causes for your bloating.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2021
Q: I am 21 year old gay man. I’ve had ulcerative colitis for about a year now. It has been very hard on my mental health, particularly the sex aspect of my life. It feels like I’ll never be able to do the “back door” part of being intimate with someone. Will I ever be able to?
A: With full mucosal healing in the rectum and no urgency, bleeding or perianal fistulas or fissures, sexual activity is possible. I recommend discussing your sexual health as a goal of your treatment with your gastroenterologist and continuing to adjust your treatment to achieve healing of your colon. Also, getting appropriate psychological counseling is a great addition to your care.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
December 2020
Q: Is the Specific Carbohydrate Diet one that is helpful in controlling ulcerative colitis symptoms?
A: A Specific Carbohydrate Diet(SCD) is a grain-free diet that is low in sugar and lactose. It is considered an exclusion diet in which foods are eliminated from a patient's diet. It takes discipline to maintain; it requires more meal-planning and preparation. Studies with adults and pediatric patients with IBD have shown that a SCD is often more useful to manage symptoms for Crohn's than UC.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: My partner has had Crohn's for 10 years. Two years ago, he had surgery (resection). He loves food and has been focused on regaining weight lost. Now, he has put on weight and has been sedentary because of COVID-19. I worry about his diet which includes fried foods, rich sauces, take-aways, fizzy drinks, lots of snacks (crisps, sweets); odd eating times. I think he would benefit from professional help, although he is resistant. What can I do?
A: A registered dietitian is a helpful member of a patient's health care team. Consider a nutrition consult if he is interested in improving his diet. www.eatright.org is a useful way to find a dietitian in your area if your health care team does not have a dietitian. If he is interested in making a few changes, consider ordering healthier foods from restaurants for take-out or curbside. Add more fruits and vegetables. Many people have struggled with erratic mealtimes since mid-March due to pandemic.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I have ulcerative colitis that is in remission most of the time. Is coffee bad for IBD patients or just the caffeine component? Would decaf coffee be ok when I am in remission?
A: Caffeine is often considered an ingredient to avoid during a flare. Caffeine can have a laxative effect for some patients. A study looking a patients' perception of the effect of caffeine on symptoms (Barthal, 2015) showed that patients felt caffeine made GI symptoms worse. However, many adults continued to drink coffee. Decaffeinated coffee may be the safer choice.
It is important to remember that caffeine is not associated with inflammation.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I am looking for a protein powder supplement. I do not eat meat, though I will eat eggs. When in a flare-up, I limit my bean intake. I also avoid gluten as much as possible. Is there a certain type of protein that could be suggested for UC patients (pea, cranberry, whey, etc.)?
A: It is important to determine the amount of protein recommended. Talk to your health care team and set a goal.
There are some many protein powders and drinks on the market. First, look at the protein source. Try a small amount of a dairy-based or plant-based protein powder to determine if you tolerate. Plant-based protein powder can be made from grains, nuts, soy, or seeds. Some protein powders are blends of a variety of plants.
When comparing protein powders and drinks, look at the sugar content. Many supplements are high in sugar.
When comparing protein powders and drinks, be aware a 2018 study showed some powders and drinks contain heavy metals like arsenic, cadmium and lead. Do your research before purchasing.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
December 2020
Q: I am having my first flare up of Collagenous Colitis since first being diagnosed 1 year ago. My GI doctor said to stay on a bland diet and Bismuth therapy for 8 weeks. What exactly is a bland diet? I just added Gluten free Bread to my diet. Are there other foods I need to add to my diet?
A: A bland diet is a meal plan that includes foods that are easy to digest. Choose foods that are low in fat, low in fiber, and easy to chew. A bland diet often consists of foods that are mild in flavor. Spicy foods should be avoided. A bland diet is generally a diet to exclude, not a diet to add foods.
It might be useful to keep a food diary to identify any possible food triggers.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
August 2020
Q: I’m having my first flare up of Collagenous Colitis since first being diagnosed 1 year ago. My GI doctor said to stay on a bland diet and Bismuth therapy for 8 weeks. What exactly is a bland diet? I have been eating a BRAT diet. Only water, low sugar Gatorade and Chamomile tea. I just purchased some Gluten free Bread. What other foods can I add to my diet.
A: Diet prescriptions are very patient and provider specific, so if you are not sure what you’re supposed to eat please ask your provider for clarification. In general, a bland diet means to eat foods that are low fat, and not heavily spiced. Foods that are baked, steamed, boiled, poached would be allowed on this diet. This is similar to a BRAT (banana, apples, rice, toast) diet which is also low in fiber. You don’t have to avoid gluten on a bland diet and you may be able to tolerate plain white bread and pasta. You can also add plain proteins (hard boiled egg, baked/boiled chicken, canned tuna packed in water, lean ground beef, firm tofu, plain yogurt, creamy peanut butter), refined grains (white rice, white pasta, white bread, rolled oats, rice cereal), cooked vegetables (cooked spinach, boiled/baked potatoes), peeled fruits, and pureed beans/lentils. Be sure to include these plant foods in your diet because they help feed a healthy microbiota (the microbes in your gut), provide soluble fiber which will help your colon recover, reduce urgency, and reduce bowel movement frequency.
ANSWERED BY:
Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
Registered Dietitian, Nutrition and Integrative IBD Program
August 2020
Q: I was awaiting a bowel resection, which has been cancelled due to Covid-19. In the meantime my consultant has recommended a liquid/ semi liquid diet along with 1/2 supplementary drinks per day. I am really struggling to adjust; I am constantly hunger and I am confused on what foods are okay? Am I allowed mashed potato and vegetables? Some reports say yes others say no? Am I allowed high fiber cereals like Weetabix, which I previously was told to avoid but now my diet largely lacks fiber.
A: There is no official definition for a “semi liquid diet” so please get clarification from your provider on this. They may have a dietitian that they work with that they can refer you to for individualized nutrition counseling. For our patients needing surgery we sometimes recommend a full liquid or low fiber diet until they can have surgery. A full liquid diet would include foods like milk, pudding, smoothies, yogurt, and soups that
have been pureed (without chunks or hard particles). The next step up would be pureed foods, like mashed potatoes, pureed carrots, apple sauce, pureed meats, creamy nut butters, cream of rice, pureed beans. The mashed potatoes and cooked/soft vegetables may fit your provider’s definition of semi-liquid if they are pureed or easily mashable in your mouth. Weetabix would not be allowed, neither would salads, dried fruits, coconut, mushrooms, or anything that takes a lot of chewing to break down. You may need to eat several times daily, or larger portions if you are getting hungry. You can also ask your provider about nutrition supplements to help prevent weight loss before surgery (which can lead to more complications), give you energy, protein, and vitamins/minerals while you are on this restricted diet waiting for surgery. Some nutrition supplement options include Ensure, Boost, Kate Farms, Orgain, and Modulen.
ANSWERED BY:
Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
Registered Dietitian, Nutrition and Integrative IBD Program
August 2020
Q: My brother was just diagnosed with UC and has been out of the hospital for a week. He is unable to keep food down and has lost 25lbs and counting. What are some suggestions on things he can eat for protein and fat?
A: A registered dietitian can help your brother understand which foods to eat to help regain his weight and recover from his recent hospitalization. Protein will be important to help him recover, and energy from soft foods will help him regain weight. Sometimes high fat foods can make symptoms worse. Some foods he should try to include are: Baked chicken, firm tofu, plain yogurt, creamy nut butters, plain rice/pasta, sourdough bread, steamed vegetables, peeled fruits (apple sauce, banana, melon), and pureed beans. Beans are really good for the colon as they are fermented by gut bacteria to produce anti-inflammatory short chain fatty acids. Too many beans at once can increase gas and bloating, so he should try small portions initially (1/4 cup to ½ cup).
When he’s feeling better, and if it’s ok with his doctor, he should try to eat more high fiber foods (whole fruits, salads, whole nuts, seeds, beans, whole grains) as these will help stimulate the growth of good microbes in his gut and prevent chronic illness like diabetes, heart disease, and high blood pressure.
ANSWERED BY:
Kelly Issokson, MS, RD, CNSC
Registered Dietitian, Nutrition and Integrative IBD Program
Registered Dietitian, Nutrition and Integrative IBD Program
March 2020
Q: I am wondering about the safety of using zinc supplements with Crohn’s. My daughter has Crohn”s and I have given her a zinc supplement to use to help recover faster from a cold virus. There are warnings on the bottle of zinc stating that people with autoimmune diseases should avoid zinc. Is this a valid warning for people with Crohn's?
A: On the contrary, zinc deficiency, along with iron, vitamin D and vitamin B12, can be seen in Crohn’s disease. I would recommend checking zinc levels and if appropriate and normal no need for supplementation. Short courses of zinc supplements for viral infections is considered safe.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: My 24-year-old granddaughter was diagnosed with small bowel Crohn’s, December of 2019. She met with the GI doc in Jan 2020. I went with her and the doctor did a good job of explaining her results from her tests and said his plan was to start her out on a course of Prednisone for 8 weeks. After completing the Prednisone his plan is to start her on Humira. I'm concerned that she is starting on these drugs too soon. Couldn't diet modification be tried first?
A: There are some recommended dietary modifications that can be used as a complement to traditional therapy for Crohn’s. Please see the Crohn’s and Colitis Foundation website. Most patients need biologic therapy with Crohn’s to truly alter the disease before it gets too late and we run into complications like narrowed bowel (strictures), infections (abscess) and abnormal connections (fistula). Some studies show us that if you wait an average of 13 months before starting biologic therapy then the risk for these complications rises dramatically.the biggest adverse effect in Crohn’s is under treated disease, not the medications.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
February 2020
Q: I have Crohn’s Disease. A lot of foods such as dairy give me painful side effects like gas, stomach aches or nausea. Can you help give me a list of nondairy alternatives?
A: Some patients with IBD may also have underlying lactose intolerance. Lactose is the type of sugar in milk and dairy foods.
To digest lactose, people need a specific enzyme in the small intestine called lactase which can be impacted by inflammatory bowel disease. If you have trouble digesting lactose, you may experience diarrhea, bloating, stomach pain, and gas symptoms. Limiting or avoiding milk and dairy products can help ease these symptoms.
Taking lactase supplements before having milk and dairy products may also help. Milk and dairy containing foods are a primary source of calcium, so making sure to include other sources of calcium in the diet or speaking with your healthcare provider about a multivitamin would be beneficial.
Dairy/lactose free alternatives include lactose-free milk,
nondairy creamers, nondairy whipped toppings, soy based sour cream, and other almond, cashew, oat, pea protein, rice, or soy based dairy alternatives. Some people with lactose intolerance can safely eat dairy foods that contain a little lactose (less than 1 gram lactose per serving) such as aged cheese. Be sure to check product ingredients. Avoid foods made with butter, cream, milk, or milk solids. Also avoid products when the ingredients list states, “may contain milk.”
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: I recently was diagnosed with IBD. I am in college and have been doing a lot of walking around campus which is tough due to my joint pain. I have been eating a lot of sugar lately too. Could my joint pain be related to dietary sugar intake?
A: It has been demonstrated that dietary sugar consumption contributes to increased inflammatory processes in humans. The evidence suggests that eating too much added sugar and too many refined carbohydrates can cause inflammation in the body. Processed sugars trigger the release of inflammatory messengers called cytokines. According to research, it has been shown that dietary sugar intake especially sugar-sweetened beverages may be a key stimulus of subclinical inflammation, as measured by the inflammatory marker C-reactive protein (CRP).
Added sugars contribute sweetness and although they add calories, offer minimal nutrition. Make sure to read nutrition facts labels carefully. Many foods now list added sugar separately. You also can find added sugar by reading the ingredients. On an ingredient label, sugar may appear under many names. Some of the most common ones include cane sugar, evaporated cane juice, corn syrup, high-fructose corn syrup, raw sugar, brown sugar, honey, maple syrup and brown rice syrup. Dietary Guidelines for Americans recommends limiting added sugars to no more than 10% of daily calorie needs, which is about 12 teaspoons (48 grams of added sugar) on a 2,000-calorie diet.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: I have mild-moderate Crohn’s since the end of 2014. There are about 60+ foods that make me sick ranging from; milk, pasta, apples/berries, most greens, eggs, bread, oatmeal, corn, nuts, to beef/pork, etc. My intolerance is the same with/without meds. Can something else going on?
A: If gastrointestinal symptoms are still present after food intake regardless of disease activity, discussing this with your health provider could prove to be beneficial. Some patients with inflammatory bowel disease experience intolerance to food items due to underlying disease related inflammation; however, when IBD is in remission and symptoms are still being experienced after eating, this may be due to a specific intolerance, such as lactose or fructose intolerance, or Irritable Bowel Syndrome in addition to IBD.
A low-FODMAP diet may help with IBS and in some cases can help reduce IBD symptoms, but research doesn’t support its use for reducing IBD inflammation. This diet is not typically recommended if you are in a flare, but it can be helpful if you struggle with gas, cramping, and bloating and dietary intolerance. FODMAP is an acronym for Fermentable, Oligo-, Di-, Monosaccharides and Polyols. The language may sound complicated, but it is a diet that cuts back on a group of sugars that can be poorly absorbed by your GI tract. This includes foods containing fructose, lactose, sugar polyols (sorbitol and mannitol), fructans (found in garlic, leeks, artichokes, and wheat), and galacto-oligosaccharides (found in lentils, chickpeas, and black beans). Meeting with a dietitian can help identify which of these food items could be potentially worsening symptoms, and which foods can be reintroduced without exacerbating symptoms. Keeping a food log may also be helpful to help correlate specific symptoms with food items.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
February 2020
Q: My 7-year-old has mild ulcerative colitis. Would it be safe to try intermittent fasting diet with him?
A: Research has shown that dietary changes can have a big impact on inflammatory bowel disease management. Intermittent fasting (IF) is an eating pattern that cycles between periods of fasting and eating, traditionally used for weight loss. To find out whether intermittent calorie restriction or fasting plays a role in reducing inflammation, a University of Southern California preliminary study published in Cell Reports in March of 2019 tested cycles of a low-calorie, low-protein, plant-based diet on mice with inflamed bowels. In the mice given cycles of the fasting-mimicking diet, gut inflammation and other signs of IBD appeared to improve. Additionally, researchers tested three cycles of a fasting-type diet in 100 healthy people. People who started the study with higher levels of certain inflammatory markers had noted improvements in certain serum indicators by the end of the fasting diet, which may point to a role in lowering inflammation.
However, any type of fasting or restrictive diet can be difficult to adhere to and may not be suited for IBD patients given their increased risk for malnutrition. More research is needed on this particular diet such as a clinical trial to test the safety and efficacy of these fasting diet cycles in people with IBD. Intermittent fasting is not as of now recommended as a way to help treat IBD and is also generally not recommended for individuals in periods of rapid growth, such as children and adolescents.
ANSWERED BY:
Kalee Eichelberger, RD,LD/N, CNSC
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
Specialty Dietitian at the Orlando Health Digestive Health Institute Center for Inflammatory Bowel Disease
January 2020
Q: I am in a relationship with my girlfriend who has UC and she has just lost all sex drive. She says she still finds me attractive and everything but it hurts and she just doesn’t “get in the mood” anymore really. What can I do? I have hardly had sex 6 times in two years and it is REALLY effecting my mental and daily life as well.
A: Thank you for this question on a sensitive and important topic, intimacy and sex in IBD. I appreciate that you are asking what YOU can do. It’s a good place to start. Expressing how you feel about the current state of your relationship in a compassionate way may open the door to learning how your girlfriend is feeling. Perhaps she is struggling with symptoms that she feels embarrassed by? Maybe due to medication or disease activity she has low energy, fatigue, pain, low sex drive or body image concerns? She may feel sad, depressed, worried or frustrated? All of which can dramatically impact how one wants to engage with their partner. Your girlfriend may desire to be intimate with you, but her physical or emotional symptoms may be a major factor. By opening the door of communication, together you can discuss what your next steps are as a couple.
Establishing care with a therapist who understands the nuances of chronic health issues may be helpful for you. Therapy goals might include having a safe place to express your feelings, learning communication strategies and developing ideas for different types of intimacy that may aid in strengthening your relationship.
If your partner believes that her disease is contributing to her intimacy concerns, talking with her medical team is important. Talking with a gastroenterologist about sex might seem uncomfortable, but this is an important conversation. They need to know many of the most personal aspects of your life because they may be able to help. The doctor may run labs, assess disease activity and/or have some suggestions to aid in stabilizing health which may with time boost mood and sexual desire. If pain or discomfort contributes to the lack of sexual interactions, her doctor may recommend working with a pelvic floor physical therapist. Your girlfriend may also benefit from a mental health provider to discuss the various stressors/complexities associated with having IBD.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
January 2020
Q: I have Crohn’s and been in a flare up for so long. I am getting depressed. Most days I don’t want to get out of bed to go to work because I am so tired from everything including diarrhea, fatigue, abdominal pain, weight loss and sleeplessness. Doctors are trying to find the right medications to get me in remission. Is there medication I can take or something I can do to get me out of my bad mood. I feel so down and defeated all the time.
A: I am sorry you are not feeling well and commend you for being aware of how your physical health can impact your mood and emotional health. Ensure that you are discussing both physical and emotional symptoms with your gastroenterologist. They may need to run labs (iron deficiency anemia, Vitamin D, B-12, TSH, etc) to see if there are deficiencies that are also contributing to your fatigue, healing and mood symptoms. By treating the deficiencies physical and emotional symptoms may see improvement.
There are different types of medication that can be prescribed to aid with mood stabilization that you can speak with your physician about. However, working with a mental health professional to discuss your depression, learn ways to cope with emotions related to the complexities of IBD and over time gain confidence to manage emotions and stress related to disease management. Sometimes therapy is enough to get you feeling well again, other times a combination of medication and therapy is best. Be open with your physician; ask if they have a referral recommendation for a mental health provider. If you and your team think medication is a next step for your treatment plan, consider consultation with a psychiatrist. You can check www.romegipsych.org to see if there is a mental health provider who specializes in working with people who have gastrointestinal conditions.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2019
Q: What is your thoughts on using Senna Tea for constipation?
A: Senna tea can help with constipation but if you have an obstructive stricture, this will not be a good idea. There can also be side effects of the tea so be sure to discuss the use of any products with your health care provider.
ANSWERED BY:
Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
Clinical Professor- Pediatrics Gastroenterology
December 2019
Q: Will almond milk or peanut butter cause inflammation or will it aggravate Colitis ? I know eating nuts and seeds in their solid natural form is hard to digest but what if the food is in a liquid and or butter form, i.e. almond milk or peanut butter ?
A: Almond milk or peanut butter will not cause any harm. Nut by themselves are not harmful, we recommend avoiding nuts in patients with strictures in case undigested material gets impacted.
ANSWERED BY:
Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
Clinical Professor- Pediatrics Gastroenterology
November 2019
Q: Will almond milk or peanut butter cause inflammation or will it aggravate Colitis ? I know eating nuts and seeds in their solid natural form is hard to digest but what if the food is in a liquid and or butter form, i.e. almond milk or peanut butter?
A: Please note - nuts and seeds do not increase inflammation or worsen colitis. They are great foods that have fiber, healthy fats, protein, and antioxidants. That said, during a flare the whole food forms may be harder to digest or feel a little irritating to the GI. So the modified texture such as smooth nut/seed butter (almond butter, sunflower butter, cashew butter, etc) or milks (coconut milk, hemp milk, etc) can definitely be more conducive during periods of inflammation. Make sure to reduce added sugars, processed oils, and additives such as carrageenan when choosing nut/seed butters or milks.
ANSWERED BY:
Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
Founder of Alanna Cabrero Nutrition
November 2019
Q: I'm 16 and was diagnosed with Crohn's last year. However, I experience severe constipation and have been hospitalized before because of it. Information I read says to eat vegetables when constipated but a lot of the veggies I can't eat because of narrowing. What foods will help with constipation? What other lifestyle and diet changes should be to help with this issue?
A: My recommendations for patients who have both constipation and narrowing of the GI are the following:
1) Slow down and chew your food well.
2) Drink enough liquids (ideally water) while eating.
3) Modify textures, especially when it comes to fiber. Therefore, cooking, liquefying (smoothies, soups, etc), grinding, pureeing, or finely chopping can help boost fibrous foods without making matters worse.
4) Spread out your fiber throughout the day.
5) Move after meals to aid digestion. Ideally, walk 5-10 minutes after bigger meals.
6) Make sure you are squatting on the toilet to aid proper evacuation of bowels and reduce straining. You can use something like the Squatty Potty, but it can also be a simple step stool.
7) Consult a dietitian. There may be supplements or other specific suggestions that can help you. Constipation varies patient to patient, so I may use magnesium, fiber supplements, abdominal massage, or coffee to stimulate bowels, to mention a few, but it may not be favorable to everyone.
ANSWERED BY:
Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
Founder of Alanna Cabrero Nutrition
October 2018
Q: My daughter was diagnosed with UC in December 2017. She is currently taking Apriso and ProctoFoam. Her symptoms have decreased at times, but not always and she is currently experiencing diarrhea, abdominal pain, and fatigue. I have heard from some people mention Tumeric for fighting inflammation throughout the body. What are your thoughts on Turmeric for UC patients?
A: Anytime a patient is interested in adding an herbal supplement or botanical, discuss with your medical team.
Tumeric is derived from the rhizome of a plant from the ginger family. It has been used in Asia to season food. It has a bright yellow color. Curcumin is a compound found in turmeric and it has been touted for its anti-inflammatory effects. There are some studies that indicate mucosal healing with the addition of turmeric/curcumin to medications.
Turmeric in amounts that have been tested are generally safe when taken orally. High doses may cause GI symptoms. Check the commercial products for any additional ingredients.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
October 2018
Q: I have Crohn's disease and have read about the benefits of drinking celery juice first thing in the morning on an empty stomach. Do you recommend trying it? Also can juicing fruits and veggies (as opposed to eating them) be a good way to get the nutrients they provide?
A: I have not read any evidence-based journal articles about celery juice. I cannot recommend celery juice.
Juicing fruits and vegetables is popular. Juicing is not any healthier than eating whole fruits and vegetables. If you prefer to juice, consider making smoothies by adding yogurt to the homemade juice.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
October 2018
Q: I’m trying to learn more out about diet for my Crohn’s Disease. I know it says to stay away from sugars but are there any sugars allowed? Like regular sugar just not processed?
A: No one diet has been scientifically proven to manage Crohn’s disease. Some patients are interested in carbohydrate restriction like the specific carbohydrate diet, gluten-free diet, and FOD Map diet. Some patients have seen reduction in GI symptoms when they modify their diets. Always discuss with your medical team.
ANSWERED BY:
Lesley Stanford, MS, RD, CSP
Pediatric Nutritionist, Duke University Medical Center
Pediatric Nutritionist, Duke University Medical Center
June 2018
Q: I was diagnosed with Crohn's over a month ago and have drastically adjusted my diet along with the medication. My biggest heartbreak is coffee. Do people find it problematic to drink it (only one cup a day) while in remission without it contributing to a new flare up or is it best to be remove it from my diet forever?
A: There is no clear research on coffee/caffeine and IBD. I am usually okay with most of my patients having a cup of coffee (or two) a day. That said, there are usually a few things that I clarify about coffee/caffeine beforehand:
1) Caffeine stimulates the bowels, so if you have urgency and/or diarrhea, which usually accompany a flare, I would avoid. It’s just basically fueling the fire and not helping the symptoms.
2) Coffee is not all created equal. A lot of the negative health associations with coffee are more related to what you put into the coffee – sugars, artificial sweeteners, fat, etc. So, a little bit of milk, lactose free milk, or milk alternative is the better choice. And remember, 1 cup equals 8 ounces (portion control).
3) Coffee/caffeine can exacerbate stress, anxiety, and alter sleep. So, if you are experiencing any of these issues, I would decrease or avoid.
ANSWERED BY:
Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
Founder of Alanna Cabrero Nutrition
June 2018
Q: I’m wondering what oils my daughter can have. She has been diagnosed with ulcerative colitis. I know olive oil is good but vegetable oil is not. What about cotton seed oil, soy bean oil? Palm oil, sunflower oil and hydrogenated vegetable oil? Any help would be greatly appreciated.
A: • Flaxseed oil is a great option for drizzling and salads. It’s high in plant-based omega-3 fatty acids, but you can’t cook with it, because it oxidizes quickly.
• Extra virgin olive oil is my favorite and a great choice for low-smoking points, so usually okay for drizzling, salads, and light sautéing. It has high amounts of anti-inflammatory monounsaturated fats that are also easier to digest/break down.
• Avocado oil is packed in heart-healthy monounsaturated fats, but unlike olive oil can be used at a higher smoking point (about 375 to 400F). It has a neutral flavor, and has been less chemically processed than canola or other vegetable oils.
• Cold-pressed safflower or sunflower oil is low in saturated fats and high in omega-9 fatty acids. They both have higher smoking points (about 475 to 510F), so can be used frying (in moderation) and sautéing.
• As far as soy bean oil, it’s a great source of polyunsaturated fatty acids as well as vitamin E, but much like other vegetable-based oils, I would choose cold-pressed or expeller-pressed oil. Ideally choosing organic and/or non-GMO varieties and always avoid the words hydrogenated or partially hydrogenated, which usually imply presence of trans fats, which we want to avoid. It also has a higher smoking point at 450F.
ANSWERED BY:
Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
Founder of Alanna Cabrero Nutrition
June 2018
Q: I was recently diagnosed with a mild case of Crohn's ileitis. I was wondering what diet and lifestyle changes I should make to accommodate to my disease?
A: 1) Eat a cleaner diet. Try to choose whole foods and whole ingredients. Reduce/avoid processed, packaged, artificial, dyed, and fast food. This naturally forces you to cook a little more and have a better general awareness of food. I usually do suggest to try and choose local/organic options, especially when it comes to animal products and use the Dirty Dozen/ Clean 15 for all produce, which will help reduce pesticide exposure.
2) Avoid foods that exacerbate symptoms. It can help to keep a food/symptom diary. Some common triggers are:
a. Alcohol and/ or caffeine (stimulants)
b. Dairy products, usually high in lactose such as milk, ice-cream, creamy sauces
c. Fried or high-fat foods, such as fried foods, red meats, processed meats, pastries
d. Large quantities of roughage, such as salads, beans, whole nuts/seeds. Too much fiber, especially during a flare, usually exacerbates symptoms.
e. Refined sugars and flours. Some patients are sensitive to high amounts of gluten, such as bagels, pastas, cookies, etc
f. Additives and preservatives such as MSG, antibiotics, emulsifiers, artificial sweeteners, and coloring agents
3) Instead of altogether avoiding foods, try to change the quality and/or texture of the food. For instance, patients during a flare may not be able to have a salad, but you may be able to include a little spinach in a smoothie, add yam and squash to a chicken soup, or have soft/skinless fruit such as bananas, cantaloupe, or papaya as a snack. Cooked, blended, stewed, ground, and pureed food are can be easier to digest.
4) Focus on how you eat as much as what you eat. Chewing your food, slowing down, eating mindfully, and avoiding overeating are as important. This aids the digestive process and essentially creates a better relationship with food.
5) Find something that helps you relax and find your happy place, it can be meeting with a friend, finding a support group, meditation or Yoga. Stress mgt is a key part of your overall healing.
ANSWERED BY:
Alanna Cabrero, MS, RDN, CDN
Founder of Alanna Cabrero Nutrition
Founder of Alanna Cabrero Nutrition
February 2018
Q: Our 9-yr old was diagnosed with Crohn's 8 weeks ago, and is on Remicade. He is on a mostly liquid diet. Because the protein drinks are coming 3 times/day, he started fighting us and not wanting to drink them. Each and every bottle is a battle that has just worn us down emotionally. We're at our wits and creativity end trying to find ways for him to take them. We've tried Special-K chocolate, Ensure Clear, and Carnation Breakfast. This is so very, draining. Any advice is much appreciated.
A: Having a child with medical issues can create many obstacles that sometimes we just need help to navigate. Communication with your son’s gastroenterologist or pediatrician is a great place to start. Discuss your concerns, what you have tried and how this is impacting the family. They will likely be able to provide some suggestions or direct you to a specialist who can help. To address the dietary aspects, ask if there is a pediatric dietitian who specializes in IBD or feeding issues. This person may be able to create a tailored diet plan taking into consideration your child’s age, diagnosis, medication, and medical recommendations. Also, a child psychologist would be a wonderful addition to your child’s team! Perhaps there are some emotions that your son is having a difficult time processing which impacts other aspects of his life (i.e. eating). The child psychologist can aid your child in working through the various aspects of having IBD in a developmentally appropriate way. The psychologist can also work with the family to aid with implementing strategies to make things less challenging at home.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
February 2018
Q: I was in remission for about 8 months. Recently I had a flare and my doctor wants me to go on Imuran. I have been to the point of having a mental and nervous breakdown over this due to my fear of the cancer side effects. The 2 specialists I saw say to weigh the risks and I know the risks of the flare, however, I literally cannot function or enjoy life at the prospect of taking a medicine that could kill me. This is dramatic but I haven’t been able to cope with this and need help.
A: Taking a new medication, especially one with scary, possible side effects, can be anxiety provoking. Fears related to the unknowns and uncontrollable aspects of the medication can drive that anxiety as well. If you are feeling debilitated by the anxiety and worry over this medication, seeking the support and guidance of a psychologist can be very appropriate and helpful. Look for a mental health provider who specializes in gastrointestinal disorders, chronic health issues and/or anxiety. A provider who specializes in the use of Cognitive Behavioral Therapy (CBT), a type of therapy very commonly used in medical settings and to treat anxiety. CBT is used to address your worrisome thoughts and provide you with tools to better manage them. Mental health care when managing a chronic disease, like IBD, is often just as important as your medical care. Your therapist can aid you in developing tools to better manage stress and adaptively cope with worry and fear. When you feel better about your self-management skills, you can regain focus on the enjoyable aspects of your life.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
February 2018
Q: My mom thinks I am researching and educating myself on Crohn's because I want attention, wants to lay down and be a "bum" all my life and want pain meds and thinks I'm making up the pain and the whole diagnosis. Says she knows people who have it and are never in pain so I must just want a fix and thinks I'm making myself sick (throwing up and diarrhea) She's causing me more stress and depression. What can I do to inform her better or something?
A: Sometimes having IBD can feel as though you have an invisible illness. That can make it hard for family and friends to truly understand all the ways in which IBD impacts your life. There is a great deal of education that is required to successfully navigate IBD. Asking your loved one to learn with you can be a good starting place. Also, consider outside resources for support, such as friends, the IBD community, and a mental health professional.
Here are a couple suggestions to aid with building a support network:
• Invite your family member to an appointment with your gastroenterologist. Ask your provider to discuss the disease, impacts on the family, treatment and potential side effects of treatment.
• Ask your loved one to read this document about being diagnosed and managing IBD: http://www.crohnscolitisfoundation.org/assets/pdfs/newly-diagnosed.pdf
• Invite your family member to a Crohn’s and Colitis Foundation patient education event in your area.
• Join an IBD support group to talk with other people who have IBD and have had similar experiences with family and friends.
• Invite your family member to sit with you and watch IBD School videos from IBD experts at the University of Michigan: http://www.med.umich.edu/ibd/school/index.html
• Communicate how it makes you feel when your loved one doesn’t take your disease seriously. Let them know how they can best support you.
• Consider establishing care with a mental health professional who works with people with chronic illness to learn skills to manage the many complexities of IBD.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
November 2017
Q: How common are emotional problems while on biologic medication? I’ve been on a biologic for 3 years and I've experienced severe mood swings and deep depression and feel like I'm not myself. I get angry for no reason and am very irritable and I cry all the time. I need to take this medicine because I have severe Crohn’s but I can't take the emotional side effects anymore.
A: Emotional problems related to being on a biologic are not commonly reported in the literature. However, there are many other factors to consider in terms of mood and the complexities of having IBD. If you are feeling significant changes in your mood (i.e. depression, anger, anxiety, etc), you should address this quickly with your primary care provider or your gastroenterologist. Working with your providers to assess mood, the factors that may contribute and how to stabilize your emotions is important! They may recommend a review of your medications, a consultation with a mental health provider and/or an assessment with a psychiatrist. You must be your own best advocate. It is necessary to speak regularly with your providers about not only changes in your physical health, but changes in your emotional and mental health. This ensures that you are receiving the right care from a variety of specialties to address all aspects of your health.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2017
Q: I have Crohns with strictures all over small and large bowel. I have been taking Mesalamine and Imuran. I will be having an MRI soon to check if there is improvement. Is there anything I can do in terms of Diet and Lifestyle to help heal the strictures?
A: This is a great question – the answer will really depend on where the stricture is located, how many, how tight they are and if there is an active inflammatory component to them or are they the result of chronic changes from disease activity. The recommendations we make for people with Crohn’s disease strictures is to make sure that they are careful about fiber intake and higher-residue food intake. Working with a registered dietitian can help identify a dietary strategy that factors in personal preferences but also safe foods. We recommend small frequent meals, chewing food well, eating slowly, and monitoring for vitamin and mineral deficiencies that can occur due to a restricted diet.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
July 2017
Q: I have Crohn's Disease and sometimes develop canker sores that form on the tongue, lips, and gums. Can you explain what they are and how they are treated?
A: Crohn’s disease, either directly or indirectly can cause oral sores. Oral sores are rather common, present in 20-50% of Crohn’s disease patients. The sores are generally just breaks in the lining of the mouth that result in an ulcer. Since Crohn’s disease can affect any part of the gastrointestinal tract from your mouth to the anus, these sores may be a result of the disease. Crohn’s disease can also result in nutritional deficiencies (i.e., folic acid and other B vitamins) that can make a patient more prone to mouth sores. Additionally, methotrexate, a medication used in Crohn’s disease, is a common culprit for mouth sores.
Generally, if the sores are from Crohn’s, treatment of the Crohn’s itself can causing healing of the ulcers. If you’re taking methotrexate, you can increase the amount of folic acid taken on the day of the methotrexate itself (to say 5 pills that day). If neither of these are the issue, your doctor can evaluate for nutritional deficiencies that may be playing a role.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: How definitive is a diagnosis of Ulcerative Colitis? I have been in remission for 11 years, and have not taken any medication for 5 years. Does it make sense to get reevaluated to see if this diagnosis can be removed from my medical history?
A: Thanks for your question.
Without seeing the records, your first question is a difficult one to answer. Occasionally, the diagnosis of ulcerative colitis may be more difficult to make. Having the diagnosis of ulcerative colitis in your records can be challenging for several reasons.
If you have no symptoms and your colonoscopy continues to show no active colon inflammation, then your disease may be in remission. I would discuss the validity of the ulcerative colitis diagnosis with your gastroenterologist who has access to your previous records.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
April 2017
Q: I have Crohn's Disease and I’m having a hard time coping with this disease. My furry friends are the only ones that are interested in hanging with me in the bathroom and stay with me while I am in flare up mode. Is it possible to get a service dog with a condition like CD? How do I go about getting a “service animal”?
A: There are many ways to gain emotional support when coping with a chronic illness and an emotional support animal may be one avenue. It would likely be easiest for you to get approval for an emotional support animal if you are working with a mental health professional who can write a letter of support. Typically, symptoms of a chronic illness and the impact on one’s emotional functioning would need to be documented by a licensed professional. The health care provider, in their professional capacity, should have the ability to document your disability and the need for a reasonable accommodation of an emotional support animal. This provider could speak to the manner in which an emotional support animal will aid with alleviating some of the challenges associated with your disease and enhance your day to day functioning. If depression and anxiety are present, the provider may also highlight the ways in which an animal companion can help you manage mood symptoms which can improve your overall quality of life on a daily basis.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
March 2017
Q: I have IBD and I’m looking for good breakfast ideas. It seems no matter what I eat in the morning it goes right through me.
A: I would recommend first discussing with your physician whether your disease is well controlled and in remission or whether you have active disease. Ideally if your disease is well controlled you should be able to tolerate any type of breakfast. You are not alone. Many patients with active disease tend to have most bowel movements first thing in the morning or after breakfast. I would recommend minimizing caffeine and hot fluids which both can accelerate intestinal transit. Fatty foods may also result in bowel movements soon after eating. Many of my patients anecdotally tolerate oatmeal or cream of rice the best. Bananas and peanut butter also seem to be well tolerated. For patients who have narrowing in the bowel, smoothies are also great breakfast options.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
January 2017
Q: I have Crohn's and had a ileo-colic resection of about 17 cm two years ago. I am in remission and eat a healthy diet but my Vitamin D and B-12 are borderline low. (B-12 209 pg/ml, D 23 ng/ML) Do I need B-12 shots, or how much oral supplements do I need?
A: Vitamin B12 is an important vitamin needed for red blood cell production, proper functioning of nerves, and even making DNA in new cells. The human body cannot make its own vitamin B12, and in the diet vitamin B12 comes in the form of animal based foods. Most B12 is absorbed in the distal terminal ileum of the small intestine, an area often affected by Crohn’s disease. Lab measurement of B12 levels is not exact, and we usually aim for levels >300 pg/mL in order to be on the safe side because B12 is so important. The most reliable method of supplementing vitamin B12 is through shots, but it is also possible to take high dose pills (1000-2000mcg a day), pills that go under the tongue and are directly absorbed into the blood, or by nasal spray. No good studies have been done comparing the efficacy of these methods in Crohn’s disease patients, so it is important to have the B12 level re-checked after you and your doctor have selected a way to supplement your levels.
Vitamin D is important for bone health, and may be involved in the immune response as well. We generally aim for vitamin D levels above 30ng/ML, which can likely be achieved by taking a daily oral supplement of Vitamin D3 600-1000 IU daily if you level is between 20-30.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2016
Q: My 14 year old daughter has Crohn's and takes methotrexate injections. She struggles to eat the most basic foods without feeling unwell. Is there any meal replacement shakes that is suitable for have age?
A: There are definitely several options of nutritional shakes available for her age. Any nutritional supplementation or especially "meal replacement" should be done with the supervision and consultation of a registered dietitian. I would recommend asking your daughter's gastroenterologist for a referral to meet with one to discuss further.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I have tried all the meds, biologics included and after many years of little relief, I searched for natural alternatives. My UC maintained remission for 4 yrs and I have been able to control my pain and inflammation with Matcha green tea. I drink 2 cups a day but this isn't your typical over the counter tea. I buy it in powder form. Is this something you have heard of before?
A: I know patient who have received relief with homeopathic options like green tea or peppermint tea or oil. These options have not been well studies and it is worth checking with your gastroenterologist to make sure they are safe and will not cause any inadvertent harm.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: With the combo of medication + having a chronic illness, what is a good way to cope with anxiety and depressed feeling?
A: The best ways to cope with anxiety and depressed feelings are to work with a counselor or therapist to figure out what aspects of what is causing those feeling are controllable and which are not. For things in your control to change, finding distracting activities (things you have a passion for), exercise, and good social support is best. For things you cannot control, like having IBD, finding the best coping techniques to not get as stressed out about it. These techniques I describe are called cognitive behavioral therapy. These techniques are available through counselors or through self-help educational tools like golantern.com.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I understand the myriad of reasons that doctors are opposed to narcotics to treat pain related to IBD. What are we to do when, more often than not, they're the only thing that bring relief?
A: You are correct- there is a growing list of serious problems caused by opioids including tolerance (needing higher and higher dose to treat the pain), brain effects, increased risk of infection and increased risk of death. In vulnerable patients, they can lead to addiction. With chronic use, they can lead to gastrointestinal problems such as constipation and obstruction. There are patients who do well with low dose opioids and careful monitoring but given the risks, it is important to be followed by a pain specialist and to consider other non-opioid options when possible.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
September 2016
Q: Would any of the experts recommend a Paleo diet, probiotics (if so what brand or specifics to look for), or the use concentrated cherry juice for ulcerative colitis flares?
A: This is a very common question. Currently, there is no data to suggest that the Paleo diet or concentrated juices are effective for ulcerative colitis flares. As far as probiotics, not all of them are considered the same.
In mildly active ulcerative colitis, 2 specific probiotics may be useful. One probiotic, E. coli Nissle (aka Mutaflor, Ardeypharm) may be effective in putting you in and keeping you in remission for up to one year. The other probiotic called VSL#3, a combination of 8 probiotics, is effective in putting you in remission and possibly keeping you in remission for up to 6 months.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I have been diagnosed with microscopic colitis. My symptoms are weight loss from 128 to 108 pounds; gas and bloating; mild diarrhea. Could there be particular nutrients that I am not absorbing that explain the weight loss? Are there particular foods I should eat more of in order to gain weight? I have been following the Specific Carbohydrate Diet for two months and believe it helps reduce gas and bloating but I have not been able to regain lost weight.
A: That’s interesting. Weight loss is uncommon in microscopic colitis. There may be several reasons for the weight loss. If the weight loss has occurred since you started the Specific Carb Diet (SCD), it may be due to the food restrictions from the SCD itself. In addition, it may be a good idea to get tested for celiac disease, which is more common in microscopic colitis, and pancreas problems. Both these disease processes are more likely to cause weight loss.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: My Iron levels are low and my GI recommended an iron supplement. Can an iron supplement cause flares or worsen a current flare?
A: This is a controversial topic. There are studies that show that iron can worsen inflammation and those that do not. I tend to avoid oral iron in my patients with more severe disease or who are having flares but I do use it in those patients who need iron and have more mild disease.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Does IBS cause IBD? Can patients with IBD have IBS concurrently?
A: IBS and IBD are completely different processes with different causes and complications. A patient can definitely have both processes and sometimes it can be difficult to differentiate between the two when symptoms arise.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: How often should a patient have scopes after Pancolitis?
A: It depends on how long a patient has had pan colitis. If it's been 8-10 years, then generally the recommendation is 1-3 years depending on other risk factors (i.e., family history of colon cancer).
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: What type of diet do you recommend for people suffering Crohn’s and colitis? Is there anything particularly harmful that worsens symptoms or the disease?
A: This is a very popular question. There is increasing interest in this topic and more and more information is coming out. There is some preliminary studies showing that dairy products, red meat, and coconut oil may worse IBD. When a patient is undergoing a flare, I do suggest going on a low fiber diet. Because of the individualized nature of IBD, what works for one patient may not work for another when it comes to diet. Check out CCFA's diet and nutrition brochure to learn about the role of diet in IBD. http://www.ccfa.org/assets/pdfs/diet-nutrition-2013- 1.pdf.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
May 2016
Q: What foods should NOT BE eaten to avoid flare-ups? Is there a diet for UC that I can live with and reduce or not have flare ups?
A: There has never yet been a diet proven to help avoid flare-ups in adult patients with ulcerative colitis or Crohn’s disease. When in remission (symptom free), many people can eat a regular diet. However, there is not one diet that will suit everyone with ulcerative colitis or Crohn’s disease. I would recommend listening to your body and eliminating any foods you find trigger unwanted symptoms. During a flare, however, I will typically recommend a low dairy, low fiber/residue diet. This diet can help minimize symptoms that accompany a flare of inflammatory bowel disease.
There are small studies in children suggesting that the Specific Carbohydrate Diet may be able to help control inflammatory bowel disease in some patients. More trials are being done and this is a potentially exciting new development in the treatment of inflammatory bowel disease. This diet is restrictive, however, so I would recommend that you discuss this further with your gastroenterologist and with registered dietician guidance.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I am taking humira but my insurance will stop in Oct what can I do?
A: Talk with your doctor! It will also be helpful to talk with your contact at the drug company. Some people are connected with a Humira Nurse that assists them. There are programs available through the drug company to help people with low cost or no cost medications based on need. There may also be other programs in your area that your care provider is aware of to help during this time.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I have been having unbearable right side pain the past few months. My doctor did an MRE and said there was scar tissue in the Ileum. I also had another colonoscopy and then the next day was my remicade infusion. For 10 days since then I have been running a temp between 99 & 101, a severe headache & side pain. They did a ct scan and ruled ruptures and infection. Are these typical symptoms following a colonoscopy? What is the treatment?
A: These are not common symptoms after a colonoscopy. Because you are on Remicade, I would recommend being evaluated for sources of infection if you are having a fever. The treatment would become more clear once your care provider finds the source for the problem.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
June 2015
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
October 2014
Q: I’ve had three ballon dilations in the last 14 months and they usually last 6 months or so. I’ve been on Humira for almost two years with no side effects. I have a stricture that really makes me constipated. My gastro said my intestines are free and clear of any inflammation but it's just the stricture. He said there are no other options except a colostomy? I find that hard to believe. Is he correct? What about anoplasty flap?
A: Crohn’s disease can cause structuring anywhere along the intestinal tract including where the rectum meets the muscles that provide control over bowel motions. A stricture at this level is generally treated with dilatation sometimes in combination with steroid injections into the site. The patient is then encouraged to use products that promote a well-formed stool that acts to dilate the area as it passes through. In rare instances, the stricture can be managed by excising a short area of narrowing and reconnecting the two ends of bowel usually in combination with a temporary ileostomy or colostomy. An anoplasty flap is generally not appropriate because the stricture is not close enough to the skin surrounding the anus to allow such an operation to be successfully performed.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
June 2014
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex.. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2014
Q: My significant other has Crohn's. I believe his Crohn's has seriously affected our sex life, but I cannot be sure because he won’t talk about it. During what he calls "a flare-up," we cease all intimacy and most affectionate contact. He gets so cranky and critical of me, I lose interest in sex.. He will only occasionally mention symptoms when they become too obvious to ignore. Is it typical for Crohn’s Disease to interfere with intimacy and sex?
A: I’m glad you asked this question. This is an important subject and probably does not get the attention it deserves. It’s not unusual for persistently active Crohn’s disease to have affects on intimacy and sex. Mood, self-consciousness, and illness perception are important determinants of sexual health and can also be adversely affected by Crohn’s disease. I would suggest a few different options. First, it’s important that your husband’s Crohn’s disease is evaluated and appropriately treated for any evidence of ongoing active disease by his gastroenterologist. If active Crohn’s is not causing his “flare-ups,” then his symptoms will need to be evaluated for other potential underlying causes. Second, it may be helpful to attend a support group (either an IBD or better yet, an ostomy support group) as this may be a common topic among other patients. Third, I believe it’s important to communicate your feelings and express your concerns to your husband. You may find that your relationship improves as a result.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2014
Q: I had surgery to remove my colon in 2000. Should I be supplementing my diet with vitamins? if so, which ones?
A: The food we ingest passes from the stomach into the small intestine (duodenum, jejunum, and ileum) before entering the large intestine (colon and rectum). The small intestine is responsible for absorbing most minerals and vitamins from the food we eat, and this process transfers these important substances from the bowel lumen to the bowel wall where the minerals and vitamins enter a network of blood vessels draining into the liver.
The principal role of the large intestine is to remove water and electrolytes from liquid waste to hydrate the body and produce solid waste. The large intestine also absorbs vitamins that are created by the colonic bacteria, such as vitamin K, vitamin B1 (thiamine), vitamin B2 (riboflavin), and vitamin B12 (cobalamin). However, the bulk of these vitamins are absorbed in the small intestine through normal processes.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
May 2013
Q: Do people ever gain weight after colonectomy surgery?
A: Patients’ weights can respond differently to having their colons removed. For example, patients who have taken steroids for an extended period of time often experience weight loss after their colon surgery because they are able to successfully discontinue their steroid therapy. Similarly, patients kept inactive secondary to their disease may lose weight after the affected bowel is removed because they can resume more vigorous activities after recovering from surgery. On the other hand, patients whose diet or caloric intake was limited by their disease, will often gain weight after their colectomy because they can return to a more healthy diet that enables their bodies to rebuild.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
February 2013
Q: I have been going through some rough flares recently and am so tired all the time. I used to go to work with initiative to accomplish goals and be successful in what I do. Now I just do not care. I know that I am blessed to have a job, but struggling with this disease has taken away my drive for work, exercising, and even spending time with my family. Do you have any advice on how to get the drive back?
A: Fatigue is a very common problem in patients with IBD, both during disease flares but also during times of remission. This fatigue can come with poor sleep, low energy, and depression, if symptoms become severe enough. Sleep disturbance is common in patients with IBD, and there are several potential reasons for this, one of which is that the inflammatory substances in the gut may also have an impact on the brain. Medications used to treat IBD affect sleep, especially steroids. If poor sleep is contributing to the symptoms you describe, there are things you can try to get better sleep. These techniques, sometimes called ‘sleep hygiene,’ include setting a specific schedule and being very consistent in sleep and wake times. People who sleep the best often engage in relaxing activities before bedtime, rather than watching violent TV or movies that can arouse people. It is important to get all of your sleep at one time, and you should avoid napping during the day, especially if you find yourself tossing and turning at night. People are encouraged to avoid alcohol, as this can worsen the quality of sleep and make it less refreshing.
When “drive” is low, a jump start is often needed, and the longer you remain ‘stuck in a rut,’ the harder it can be to break out. However, just like bad habits can breed more bad habits, good habits can lead to more good habits and help you to break out of your low motivated ‘funk’. Scheduling your day (and sticking to it!) can be very useful with this, and I would encourage you to detail your activities for the week. Be very specific and build enjoyable things into your schedule (exercise, time with family), as well as things that you have to do (work). The longer you can stick to this routine, the easier things become. Sometimes, low motivation and poor sleep may be signs of depression or other mental illness, so if your symptoms are going on for more than two weeks, it is worth discussing with your physician as you may require more help
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
February 2013
Q: My wife just up and left me 4 weeks ago and my stress level is at an all time high. I feel like I'm having a breakdown and my stomach has been in constant turmoil. I tried now for 4 weeks to tough it out and let myself heal emotionally the natural way, but it just isn't working. Any advice would be greatly appreciated on how to deal with the stress and managing my Crohn’s disease.
A: Life stress, especially the loss of a relationship, has been linked with worsening gastrointestinal symptoms in patients with IBD. This is thought to be due to the strong connection between the gut and brain, especially the areas of the brain that regulate our emotions. Though I’m sorry to hear about your recent break-up, there are several things you can do to decrease stress and help yourself feel better during this challenging time. First, it is very important to get back to activities that are enjoyable for you, even if it is difficult to force yourself to do them. When we relax or find pleasant diversions, it gives our brains a rest from processing the stress. Taking 10 minutes a day to focus on relaxation can be effective in decreasing stress. One breathing exercise involves deep slow breathing…counting to 4 while breathing in through your mouth, holding it for 4 counts, and letting the breath out through your mouth over 8 counts for 10 breath cycles can decrease stress. Second, finding the company of trusted friends is especially important when dealing with stress, as positive social interactions have been shown to decrease the stress response that affects the gut. Finally, if stress is chronic or extreme, it can through a switch in the brain causing an emotional reaction to become a more clinically significant depression or anxiety disorder which can benefit from the services of a professional therapist or counselor. Letting your gastroenterologist know about your life stress is a good place to begin.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
February 2013
Q: I was recently diagnosed with Crohn's although I've probably had it for years and didn't know it. Being told you have what is a lifelong disease that will never be cured, and will likely only get worse and may lead to surgical removal of parts of your intestines is really like being continually smacked in the face. How exactly do you accept that, I mean truly accept it? Where do I start?
A: The first place to start is to give yourself permission to have a reaction and to know that it is normal to have a range of responses when diagnosed with Crohn’s disease, something unexpected and life-altering. It is natural to go through some type of grieving process about the loss of health, similar to how people react to the loss of a loved one. The responses involved vary among individuals. Some people get sad, others get angry but there is no right or wrong way to grieve. What is important is that you recognize your feelings and remind yourself about other difficult challenges you have adjusted to in the past. Although the passage of time is the best healer, there are active steps that have helped others with Crohn’s disease accept their diagnosis. Talking about it with others is a good first step whether it is good friends or family or through a CCFA support group or activity. Some patients find it helpful to journal about their experiences as a way to work through the emotions. Others find it useful to focus on other aspects of their lives that they can control. For example, thinking about three positive things in your life or three small tasks or steps you will achieve that day. Finally, others have found that “finding the silver lining” about a situation (i.e., something positive or something that could be even worse by comparison) helps them feel better. In fact, many studies show that optimistic thinking can positively influence how well your body copes with the disease and how well your immune system responds to the medications or your gastrointestinal tract heals from surgery.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
December 2012
Q: I have Crohn's and am almost always extremely dehydrated - eyes so dry I can't blink, finger tips puckery, mouth dry no matter how much water I drink. Is this from Crohn's? What should I do?
A: Dehydration can be caused by a number of disorders and can also be associated with electrolyte imbalances. We lose water through many routes including moisture in our breath as well as water in our stool, sweat, and urine. It is important to maintain an appropriate intake of fluids such that you urinate at least 4-6 times each day. You can also look at the color of your urine. If your urine is a light yellow to clear, this can indicate you are adequately hydrated. Some patients with Crohn’s disease suffer from watery diarrhea that diminishes their water and electrolytes. These persons should work with their physicians to manage the diarrhea, but they should also replenish their losses by drinking sports drinks that contain both water and vital electrolytes such as sodium and potassium.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
Disease Education
February 2022
Q: I was on xeljanz from last three years and i was doing completely fine. My last scope which was held on august 2021 looked good. I developed a bloody stool again recently. I am not sure its working anymore, what should I do?
A: Bloody stool, or pain or diarrhea, is not always ulcerative colitis flaring. You should talk to your doctors to see if anything else could be going on. If the blood in your stool was for a short period, it may not be your colitis.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
December 2021
Q: I am scheduled for laparoscopic surgery for ileocolic resection due to Crohn’s disease. Diagnosed at age 40 with mild disease managed with pentasa and entocort for 14 years but now have strictures one of which is ten cm. Doctor is advising that I also begin remicade but is that before or after the surgery? Does Remicade have anything to do with existing strictures? Thanks I’d also like to know how the recovery is for this surgery.
A: It is likely that your disease progressed to stricture due to ineffective treatment of the Crohn’s disease. Pentasa is not approved in the management of small bowel Crohn’s disease and Entocort should only be used for < 3 months. There are several factors that go into decision making to start therapy after lleocolic resection and it shoulds like your physician has classified you as higher risk of progression/disease. They are likely suggesting you start Remicade after surgery as preventative measure. Remicade is effective drug to prevent post-operative Crohn’s disease recurrence and recurrent disease could lead to further strictures. I would suggest that you review the recovery with your surgery team, if you have laproscopic the recovery is shorter than if required open surgery. Please visit: https://www.crohnscolitisfoundation.org/what-is-crohns-disease/treatment/surgery
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
November 2021
Q: How do you decide between a Ileostomy vs a colostomy? This will be permanent due to a complicated anal fissula that requires removal of the rectum. My left side of my large intestine has always been red and inflamed it has always been the same section but my right side has been healthy since I began medication for my Crohn's in 2009. The risk is that I would end up having another surgery in a couple of years to remove what is left.
A: The decision is usually based on extent, location and severity of your Crohn’s disease. If the majority of your colon is involved, then an ileostomy is typically performed due to issues related to inflammatory burden, colorectal cancer risk and blood supply/technical issues related to creating the ostomy. If a limited amount of your colon is involved (especially limited to the sigmoid colon or rectum, and the rest of your colon is normal as well as the small bowel, then a colostomy may be performed. This is a multidisciplinary decision based on careful review of your IBD history, medication use, body type, weight, and prior surgical histories. Make sure to consult with a colorectal surgeon who has expertise in IBD surgeries and, if there is uncertainty, sometimes it is helpful to get an additional opinion at a major IBD center.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
November 2021
Q: My 22 yr old son is a college student and takes Entyvio infusions for Crohns. I’m concerned and not finding thorough answers to whether or not he should be vaccinated for Covid. And if so, which vaccine is recommended. What are others doing in similar situation?
A: He should be vaccinated for COVID. Back in April 2021, the International Organization of IBD (which is a panel of international experts) said that we should vaccinate IBD patients with whatever vaccine we can first gain access to. All the 3 vaccines available in the US (Pfizer, Moderna and Johnson and Johnson) are fine in IBD patients. They all will need boosters as well. Of note, the response to the vaccine will be decreased by being on Entyvio, but this still confers your son a level of protection he would otherwise not have without the vaccine.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
August 2021
Q: I am a 71 year old female and have just been diagnosed with ulcerative colitis. What would be the best multivitamin for me to take and also the best probiotic? I am diabetic. Thanks
A: I am sorry to hear about this new diagnosis. It is important that you work with your health care team to manage your disease. I recommend that all patients take multivitamin if you are 71 recommend Centrum Silver as a good option as long as approved by your treating physician. We don’t typically recommend probiotics as treatment of disease with ulcerative colitis (limited evidence). The best thing you can do for your gut microbiome (the bacteria that live in your gut) is to eat a well balanced diet (Mediterranean diet) high in fresh fruits and vegetables and lean proteins and low in processed foods, sugar.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2021
Q: My son has Crohns has had it 10 years he is 17 years old. He has been on Humira but it didn't work for him. Has just started Stelara. He has been having like a mucus discharge for several months. His doctor has done a colonoscopy and nothing showed on that other than small Crohns ulcers but was doctor said they wouldn't be causing that drainage. Wondering if there is anything you all have heard even diet changes that could help this.
A: If there is discharge in his underwear he may need an MRI of the pelvis to make sure he doesn’t have a perirectal fistula.
If the mucus is in the stool, that could be a number of things including inflammation – I would start with a fecal calprotectin level, and if this is elevated then the ulcers are causing the mucus. If he just started Stelara I would wait max 16 weeks after starting to see an improvement, and if I don’t see one I might see if he needs to switch again – not everyone responds to every biologic and the rate of response decreases after you failed one.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
June 2021
Q: Is poor circulation a side effect of ulcerative colitis? My legs and fingers numb or in pain most of the time and now my left leg has lost some mobility. I don't see much online about it. Thank you so much for any information you can provide!
A: We can see patients that also have a diagnosis of Raynaud’s which can cause issues with circulation especially in fingers and toes. I would be more concerned about the lack of mobility in your left leg which could be a sign of something more serious like a stroke. I would recommend that you review with your primary care physician and treating ulcerative colitis provider.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
June 2021
Q: Hi, I'm 13 years old and was diagnosed recently with Ulcerative Colitis. When I flare, my hands get super dry, scaly, bloody, and painful. It only happens when my stomach is bad. Is this related to the illness?
A: It is challenging to answer this based on what you are describing as rashes are best visualized. However that being said skin manifestations of inflammatory bowel disease are common. When this happens I would recommend you send photo to your GI provider who might consider a dermatology referral for further evaluation.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
May 2021
Q: I had my second COVID 19 vaccine 2 days ago. I have been very frightened of contracting COVID since losing a 31-y-old cousin to the disease and have not been getting together with family/friends. At my vaccine appointment, I was told that it may take me longer to get full efficacy of the vaccine than other people because I have Crohn’s and take Stelara, which suppresses my immune system. I wasn’t told how much longer to wait to get together with others. How much longer should I wait?
A: There have been initial studies concerned for the possibility of lower antibodies titers after the first vaccine dose in patients who are immunocompromised, but we do not know if this applies specifically to patients with IBD on biologics, and whether that is the case after the second dose. A recent small study, however, found that IBD patients on medical therapy mount the same response as patients without IBD after the Covid Vaccine. So at this point we do not have evidence that patients with IBD on Stelara or other biologic drugs will have a delay in immunity or difference in immunity. Our evidence suggests that after your second dose of vaccine, you can function as if you were a patient who has been vaccinated in the general population. No need to wait any longer than any other vaccinated people.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2021
Q: I am a 60-year-old woman diagnosed with UC 5 months ago. I initially reacted very well to oral mesalamine; all my symptoms stopped. Now I'm having a flare. Stool tests showed inflammation but no infection. Now my doc wants me to get another colonoscopy. He didn't give me a very good answer as to why -- and I don't want to get one if I don't have to (prep very hard for me, vomiting, etc.). Do I really need a 2nd colonoscopy within 6 months or are there other test that provide needed information?
A: There are multiple appropriate reasons to do a colonoscopy in a patient with UC. One of those scenarios is to evaluate symptoms, particularly if they have changed from before. For you, it sounds like you may have had mild symptoms that went into remission on mesalamine initially but now are having symptoms despite the use of mesalamine. It is not unreasonable to repeat a colonoscopy at this point. Having said that, it sounds like you had difficulty prepping for the previous colonoscopy. There are other noninvasive markers like stool calprotectin and stool lactoferrin that can also measure inflammation in the colon with a stool test. Additionally, if your disease involves the left side of the colon, a sigmoidoscopy, which does not require a traditional prep, may be a viable
option. I would encourage you to discuss these options along with a colonoscopy with your gastroenterologist to determine the best decision for you.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have been on vedolizumab for almost 4 years. I have had ongoing burning mouth
problems for over a year with recently has accompanied 4 months of thrush with a
peeling palate. Could this be a reaction to vedolizumab or to Crohn’s?
A: Thrush is not something we typically see with vedolizumab or Crohn’s disease. I would
discuss other causes for the thrush with your PCP.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2021
Q: I am 19 and have ulcerative Colitis. I tend to use toilet 2-3 times a day and don't have diarrhea. I do get blood in my stool though, not a lot but some streaks of blood on the solid stool. I also experience slight pain whenever my abdomen is bloated. I've been prescribed Mesacol suppositories for 4 weeks and I take Mesacol 3.6 grams every day. How can I tell if I am in remission or a flare-up?
A: I think the simplest way is to have your doctor check your fecal calprotectin. It’s a breakdown product of white blood cells and it SHOULD NOT be found in stool. If it’s present in your stool over a threshold value, odds are you are flaring.
If you want to figure it out on your own, it’s harder. Is your weight stable? If it’s dropping with no dieting, maybe you’re flaring. Is your energy level good? If you are napping during the day or going to bed at 9pm, maybe you’re flaring. Occasional blood in the stool is not normal, but might be your baseline if you have mild UC affecting the rectum (proctitis). If that is the case, you are on the correct medication regimen. It is possible that the disease is more extensive and the calprotectin would be good place to start seeing if that is the case.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I was diagnosed with Crohn’s 30 years ago and had a bowel resection. I have not been on medication for 27 years. I just watch what I eat. I’m feeling good except I get bowel obstructions a few times a year which is due to a stricture at the resection site. I am interested in trying an endoscopic balloon dilation, but my GI doctor will not give me any options except taking a biologic. Where can I get info on this and see if I would be a candidate?
A: I think you are right, this stricture is unlikely to respond to biologics. It’s most likely fibrotic. You can check by seeing if you have any elevated inflammatory markers (CRP, ESR, calprotectin). If they are all normal, which based on what you are describing they are likely to be, the biologics don’t have a role. Regarding dilation, the dogma is that if the stricture is less than 5 cm, it’s amenable to balloon dilation. If it’s greater, you might need surgery. The IBD Help Center might be able to direct you to GI doctors who are versed in the literature and have dilation capabilities in their office.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I had a colectomy in 2015 and have j pouch. I’ve been battling chronic pouchitis for about three years as have done multiple treatments of Cipro & Metronidazole but have major side effects. I also tried probiotics. Are there any new treatments for pouchitis?
A: Pouchitis is a bear. I don’t have to tell you. Sometimes, all you can do is redo the pouch. There are national leaders in redo pouch surgery. Contact the IBD Help Center for info on health care providers (info@crohnscolitisfoundation.org).
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
October 2020
Q: Is it normal to have problems with sex while in a flare? I am a young woman with UC and I would like to know if there is anything that can be done about pain during sex?
A: Unfortunately, sexual dysfunction, which can include pain, is common patients with UC and CD. Please bring this up with your UC health care provider, so that they can provide you with a referral to a sexual health specialist. Sometimes given the difficulties with urgency and frequency that come with a UC flare, patients can develop pelvic floor dysfunction, in which the muscles of the pelvic floor have difficulty relaxing, which may contribute to pain. Pelvic floor physical therapy can be done, if this is found to be the cause of the pain.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2020
Q: My partner has been diagnosed with Crohn’s Ileitis and she has been having terrible flare ups - always at night - her stomach swells to the size of a big balloon and is rock hard. The pain is unbearable for her. It is very difficult to watch and I feel so helpless. I have two questions: 1) Is this a normal effect of Crohn’s 2) What can I give her to ease the pain?
A: Unbearable pain should never be a normal part of Crohn’s disease. The goal for our Crohn’s patients is to be well, and in a stable remission. If your partner is in pain, she should undergo testing with her health care provider to find out why the bloating and pain is occurring, and what can be done to treat the underlying problem. Your partner’s health care provider can provide suggestions for pain control if needed as well. In the meantime, Ibuprofen and other NSAID pain relievers should be avoided in IBD patients, because frequent use can worsen GI tract inflammation. Acetaminophen, in doses as directed on the label, is an over the counter pain reliever that can be used safely for IBD patients.
5. I was just diagnosed with mild Crohn’s in my small intestines. I do not have the usual sympto
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
July 2020
Q: My fiancé was diagnosed with ulcerative colitis (UC) 13 years ago and says he never has had a major flare since his initial diagnosis. It is controlled with Lialda (mesalamine) and he gets colonoscopies once or twice yearly. He has pancolitis and each time they see quite a bit of inflammation and take many biopsies. Can you have active disease without symptoms? Is it worth the risk of additional side effects to step up treatment to reduce inflammation despite no symptoms?
A: It is certainly possible to have ongoing inflammation without symptoms. Based on your description of the colonoscopy findings, the disease is not well-controlled on current therapy. It’s always important to have a discussion with the gastroenterologist about the risks and benefits of each medication option that is being considered in order to come to a thoughtful decision that is shared, and one with which everyone is in agreement. Remember: the risks of ongoing inflammation on colonoscopy, including flares and hospitalization, surgery, and malignancy, are oftentimes bigger than the potential risks of the medications used to treat the ulcerative colitis, especially when it is severe. Symptom control is important, but ultimately, we must also strive for healing of the lining of the colon (called “mucosal healing”) and symptom control in order to give patients the best chance of being healthy in the longer term.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I have Crohn’s disease and was recently diagnosed with Immune thrombocytopenia purpura (ITP). How common is it in Crohn’s patients? What are some concerns I should discuss with my doctor.
A: ITP in inflammatory bowel disease (IBD) is considered rare, with less than twenty cases reported in the medical literature. It is a type of “extraintestinal manifestation” of IBD, or a condition that patients with IBD may have that is unrelated to the gut, but is directly related to having the disease (ex include joint aches, eye or skin conditions, and blood disorders like ITP to name a few). Concerns to discuss with your doctor would be if any medications used to treat ITP interact with medications used to treat Crohn’s disease, or could exacerbate symptoms or cause worsening inflammation.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I have ulcerative colitis and I want to get breast augmentation (probably a lift with implants). I have been in remission for years and in good shape. I take Apriso (mesalamine) to stay in remission. Is it safe to get cosmetic surgery? I am concerned about a possible flare up.
A: If your symptoms are well-controlled, and your colon looks healthy on colonoscopy, you are in what we would characterize as “deep remission”, which is the goal we strive towards in our patients with IBD. For an elective surgery unrelated to the bowel, this is the ideal position in which to be. A potential flare-up is always a concern, especially when the body is subjected to stress, but some flare-ups are ultimately not in anyone’s control. However, positioning the surgery at a time when you are in deep remission is the wisest choice, and one you should discuss with your gastroenterologist before going ahead with the surgery.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
June 2020
Q: I am 33 years old and had a colonoscopy recently because I had blood in my stool. The doctor says I have ulcerative colitis but then I found out he took biopsies. I am wondering the purpose of the biopsies are since he knows what is wrong with me.
A: A diagnosis of inflammatory bowel disease (IBD) requires many types of testing – taking a detailed history about a patient’s symptoms, family history, and tobacco history/exposure, for example, is one crucial part. Other important information to gather includes bloodwork and stool testing, colonoscopy findings and biopsy samples, and sometimes imaging tests (cat scan or MRI for example), and sometimes even additional testing still. Taking biopsies during the colonoscopy is standard when a diagnosis of ulcerative colitis is suspected.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
May 2020
Q: I am concerned about the Coronavirus. I have Crohn’s and I’m on a biologic. Are there any particular concerns or precautions IBD patients should take?
A: Information on the coronavirus is evolving daily. The current recommendation is universal precautions, with strict hand-washing and avoidance of individuals displaying flu-like symptoms. More information
on IBD patient guidelines, high risk groups, updates and recommendation on IBD medications and other important information is available on the Crohn’s & Colitis Foundation website at:
https://www.crohnscolitisfoundation.org/coronavirus-update/adults
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
April 2020
Q: I am 22 years old and have had Crohn's disease for 6 years with no other comorbidities. I've had anal skin tags and fissures during this time, and they have become progressively more irritating and painful. I've tried sitz baths and diltiazem, but they haven't helped. My GI and a colorectal specialist did not recommend removal. Are there any safe home remedies you can discuss to decrease the swelling, shrink the skin tags, or remove them all-together?
A: a. Anal fissures and skin tags are frustrating complications of Crohn’s disease. Anal fissures are ulcerations in the lining of the anal canal due to underlying inflammation, which can lead to bleeding and anal pain. These can be associated with skin tags (also known as acrochordons) and also cause discomfort. In general, persistent anal fissures may be a sign of continued inflammation related to Crohn’s disease, so speaking with a gastroenterologist to optimize Crohn’s disease therapy is recommended. Additionally, therapies, as you mentioned, such as warm sitz baths, topical analgesics and medications, such as topical nitroglycerin or nifedipine have shown benefit. These will be used for 1-2 months and then a response is assessed. In general, medical therapies will be pursued to manage anal fissures, since surgical options carry the risk of fecal incontinence and poor wound healing.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
March 2020
Q: Does pancolitis affect life expectancy? Also, what is the risk of colon cancer in people with pancolitis?
A: Life expectancy can be affected in patients with ulcerative colitis or Crohn’s colitis when they have at lease one third of the colon involved. The increase in risk of colon cancer is about half a percent per year after 8 years of disease. For example, after 16 years of ulcerative pancolitis, the risk for colon cancer is 4%. If you’ve had the disease for less than 8 years and have no other risk factors like family history of colon cancer, then there is no increased risk to you for cancer. An exception is in those patients with ulcerative colitis and primary biliary sclerosis (PSC). The risk for colon cancer starts to increase before 8 years. The key in any case is the keep the colon in a state of remission and zero to minimal inflammation throughout the duration of disease and to attain appropriately scheduled colonoscopies for early detection of “dysplasia,” precancerous areas or polyps.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
November 2019
Q: I have been reading a lot about my Crohn’s and research into serotonin and dopamine uptake imbalances found in Crohn’s patients. I am looking for more information on the subject. Can you direct me to any resources on this subject?
A: I’m sorry, we don’t know enough about this as it pertains to IBD. For example, >95% of our body’s serotonin is in the gut, and we know that this an important molecule as it pertains to intestinal motility, sensation, and secretion. This is why a lot of us try SSRIs (typically used in depression) for symptoms of pain or diarrhea. However, whether this is a something we can manipulate to treat IBD has not been studied well, mostly because we don’t have a full understanding of the mechanisms of serotonin in regards to IBD inflammation.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: Is there research that suggest the likelihood of UC developing into Crohn’s?
A: Most of us do not think that UC develops into Crohn’s. It’s true that in 5-10% of patients, we don’t always know the difference, since there is a lot of overlap at least clinically so we categorize people as “indeterminate colitis” when we are unsure of the type of IBD. I have patients who have initially diagnosed with UC who in reality find out later to have Crohn’s, and this is in spite of all of our technology and all of our experience seeing IBD patients all day. It’s very challenging and not always straightforward.
I’ll also say , however, that we are treating our UC and Crohn’s patients more similarly these days. While most people hear Crohn’s and associate this with a worse diagnosis, we all know Crohn’s patients who are very mild, and UC patients who are very sick.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: I have Crohns and I am suffering immensely from the extra-intestinal manifestations that are presenting themselves as erythema nodosum and joint pain, and most painfully - Achilles Tendonitis. I haven't seen much information regarding Achilles Tendonitis linked to Crohn’s flares. Can you offer any insight and recommendations for relief?
A: Yes, Achilles tendonitis can be an extra-intestinal manifestation of IBD. It’s also known as enthesitis, which we often treat like other EIMs, but musculoskeletal EIMs are the most common but often difficult to treat, which is why we usually enlist our rheumatologists to help us.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
October 2019
Q: Tengo la enfermedad de Crohn y me gustaría saber si está bien tomar probióticos. ¿Hay algún riesgo de tomándolos junto con mi medicación habitual de Crohn? (I have Crohn’s Disease and would like to know if it is ok to take probiotics. Are there any risk of
taking them along with my regular Crohn’s medication?)
A: Si bien no se ha demostrado que los probióticos sean adecuados como tratamiento de Crohn, algunos pacientes notan un beneficio de los síntomas al tomarlos. No hay riesgo de tomarlos con la medicación habitual de Crohn. (While probiotics have not be shown to be adequate as a Crohn’s treatment, some patients notice a symptom benefit with taking them. There is no risk to taking them with your regular Crohn’s medication.)
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I have 30+ year history of Crohn’s Disease. I have been on Humira for last 8 years with deep remission. I now have excessive and sudden joint stiffness and pain along with minor skin rashes. Can this be related to the medication or just another possible autoimmune issue?
A: Either one is possible. It could be the medication or another new autoimmune issue. I recommend consulting with a dermatologist and rheumatologist to discuss this and start an evaluation together with your gastroenterologist.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
August 2019
Q: I recently started Imuran. What preventive measures do you recommend on this drug to help avoid infectious risk? I fly a lot. Should I wear a mask on the plane? I work in a busy family practice medical clinic. Should I change my job if that is an option to avoid so much viral exposure?
A: The best way to protect yourself from infections is with prevention and optimization. First, you should make certain that your non-live vaccines are up to date – flu shot annually, pneumonia vaccine series, hepatitis A and B. As you are on immunosuppression, you cannot receive live vaccines like measles/mumps/rubella, yellow fever vaccine, chickenpox vaccine series. The second mode of prevention is through appropriate protective measures especially during cold/flu season. Hand hygiene and safe food handling practices are important. Being on immunosuppression doesn’t require extreme measures of caution during travel – but practical tips include bringing disinfecting wipes, hand sanitizers, etc to use as needed. You should wear a mask during travel or work if you have cold/flu symptoms as you don’t want to put others at risk for infection. Many people living with Crohn’s and Colitis work within the health care industry, If you work in the health care profession, wear appropriate face shields, eye protection as recommended based on a case by case basis.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I was diagnosed with Crohn’s in January 2019. Starting in February my tongue has been white. I was checked for thrush and it came back negative. My dentist told me to use a tongue scraper but that doesn't seem to be helping. Can thrush be related to my Crohn’s?
A: Thrush is typically associated with a fungal infection that may be related to immunosuppression, particularly steroid use. I would discuss your symptoms with your health care provider as medications, dry mouth, or potentially related to IBD but other causes may be more common.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
May 2019
Q: I was diagnosed in 1997 with large bowel Crohn’s. I have been on it all, and have only been in remission a few times, not very long. Recently, my doctor told me my disease had inactive Crohn’s and he is saying it is IBS with my Crohn’s. How can I be inactive, if I have massive diarrhea 4-5 hours a day every day? What is inactive Crohn’s?
A: Disease activity is related to inflammation. It is usually evaluated by endoscopy with biopsies or radiologically with CT or MRI of abdomen/pelvis. Disease activity dose not corelate well with patient symptoms in IBD. This discrepancy is more pronounced in crohn’s disease compared to ulcerative colitis. Therefore, you can be symptomatic but have inactive crohn’s disease. In other words, GI symptoms in crohn’s disease does not have to be due to active inflammation. If your disease is inactive, then adjusting crohn’s medications does not going to help with controlling your symptoms.
In this situation it is important to look for other reasons such as infections, bile salt diarrhea, lactose intolerance and functional GI/IBS like symptoms. Other possibility is celiac disease as its incidence is slightly higher in IBD patients compared to general population.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
May 2019
Q: I was diagnosed with UC in May of 2018. I am 21 and spent 4 weeks in the hospital in August 2018 with a severe flare up. After being on Prednisone, starting Humira, etc. I have not had a period in several months. Is this normal? I am on Amatiza for constipation and I also diet(Keto). I am also experiencing a lot of anxiety from all of this. Could the medication or the diet be the reasons why I have not had a period in months?
A: During acute illness and recovery menstrual cycles can be irregular or missing. This is commonly related to functional hypothalamic amenorrhea/absence of cycle due to acute illness, weight loss or nutritional deficiencies. Sometimes resolution of acute illness, correction of nutritional deficiencies or gaining the weight do not correct the menstrual cycle irregularity. Did you lose > 10% of your body weight due to keto diet, which may be the reason for absent menstrual cycle. Pregnancy needs to be ruled out and should also look for other causes like thyroid dysfunction or celiac disease. If these are absent recommend discussing with your PCP and gyn.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: My Crohn’s Disease onset occurred when I got pregnant in 2013. Since the diagnosis and treatments I've noticed my flares almost always coincide with my menstrual cycle. Whether small pains or complete bowl obstruction flares, trouble times are always just before or occurring with my bleeding. Is this just me or is this a known factor?
A: In general, women may experience gastrointestinal symptoms around the time of their menstrual cycle. Multiple studies have been done comparing patients with IBD to patients without IBD and all groups experienced an increase of gastrointestinal symptoms around the time of their menstrual cycle. Importantly, if you feel your symptoms are consistent with a flare, speak with your doctor to run additional tests (such as blood or stool tests) to confirm this. If confirmed, then you and your doctor can discuss modifying your therapy to account for inflammation. Consider reviewing the Crohn’s and Colitis Foundation Women and IBD Fact Sheet for additional information (https://www.crohnscolitisfoundation.org/assets/pdfs/womenfactsheet.pdf).
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: I have had resolving ulcerative colitis for several years; It is kept in check mostly through Asacol, then Lialda, and now generic mesalamine. Since switching to the generic, I have had very frequent burping, at times almost constantly. I have tried taking the medicine at a different time and with a full meal, and nothing seems to help. I know this is minor considering what some people deal with, but is there anything I can do to help with the burping?
A: Increased belching has been reported with oral mesalamine usage, so your symptoms may be related to the medication. However, if you are clinically doing well with this, then I would not recommend stopping your medications. You may consider speaking with your doctor about taking another formulation, if you did better with those. In general, excessive belching can be caused either by an increased swallowing of air with eating and drinking or may be related to underlying reflux. I would recommend seeing your gastroenterologist, who will likely take a careful history to help determine the etiology for your symptoms. Unless specific symptoms are present, you will not likely need further invasive testing, such as an endoscopy. In terms of management, this is guided by the reason for the symptoms, which may include behavioral changes (related to swallowing air), discontinuation of specific foods (for example, carbonated drinks and chewing gum) or if reflux is suspected medications directed at this. Consider reviewing the Crohn’s and Colitis Foundation Mesalamine Fact Sheet for additional information (https://www.crohnscolitisfoundation.org/assets/pdfs/aminosalicylates.pdf).
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
March 2019
Q: I was diagnosed last year with CD. I was started on infliximab and had a handful infusions since December. I've gone thru some side effects including intense urinary pain. I've had UTI's more times than I can count. Are urinary issues a common side effect after starting treatment?
A: Urinary symptoms are not a common side effect of infliximab. Infliximab does suppress the immune system and, therefore, you would be more susceptible to infections (including urinary tract infections). However, your frequency of UTI’s since starting infliximab sounds more than what I would expect to see on infliximab. I would recommend checking with your care team to see if there is anything contributing to the frequent urinary tract infections. There may also be measures that you can take to prevent them from occurring this frequently moving forward.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
February 2019
Q: I have had chronic diarrhea for at least 20 years. I’ve had 3 colonoscopies all normal other than internal hemorrhoids, but recently had an acute bowel perforation without any new symptoms and diagnosed with Crohn's. I have not yet started medication therapy, but I am trying to limit diet. How do I know what is working when some days I have no or solid BMs and then all of a sudden urgency and loose BM? What is considered a flare? How will I know when I am in remission?
A: Thank you for your question. A bowel perforation and a new diagnosis of Crohn’s disease is a tough ordeal. By saying you are “trying to limit diet,” I imagine you mean that you are attempting to treat your Crohn’s disease by adjusting your diet. Unfortunately, no specific diets have been adequately evaluated to prevent or treat Crohn’s disease. I don’t know the exact circumstances of your case but if you were first diagnosed with Crohn’s disease after a bowel perforation, that may suggest that your disease needs to be closely monitored and possibly treated to prevent recurrence. I encourage you to speak to your gastroenterologist regarding testing that can be done to evaluate the activity of your Crohn’s disease at this point. This may include labs, imaging, and/or colonoscopy.
A flare in Crohn’s disease may be associated with diarrhea, fever, abdominal pain, and/or nausea/vomiting. These symptoms will vary depending on the location of the Crohn’s disease in your intestine and the degree of inflammation. Ideally, remission is a combination of absence of symptoms and resolution of active intestinal inflammation.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2019
Q: I was diagnosed with Ulcerative Colitis in April of 2018 and have been blessed to not really experience any flare ups. However, recently I have been experiencing some itching in the rectum area and was wondering what that could be caused from. It tends to occur in the mornings after having breakfast. I have tried eating different things for breakfast to see if anything changes but it seems to be the same. I was eating some cereal with grains and nuts and tried doing just eggs and bread.
A: Is there a fullness when you wipe? If yes, it might be hemorrhoids. Or, do you do something that might irritate hemorrhoids every morning, like sit on the toilet a long time playing on your phone? You can also see if it gets better with Preparation H. If it does not, you might need to speak to your GI about more testing such as fecal calprotectin or a sigmoidoscopy, though typically UC recurrence is blood and pain, not itching.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I was very recently diagnosed with Ulcerative Colitis. After my colonoscopy, my Dr removed some samples to do a biopsy, to test for Crohn’s as well. Is it possible to have both Ulcerative Colitis & Crohn’s?
A: No, you can either have ulcerative colitis or Crohn’s. Rarely, you can have something called IBD-U meaning IBD-undifferentiated, where we’re not sure in which category you fit yet. What your doctor meant was that he/she took small bowel biopsies during the colonoscopy and if these are positive for inflammation then it’s Crohn’s. If they are negative it’s MORE LIKELY ulcerative colitis but we can’t be fully sure. The two diseases are hard to tell apart, though as a rule of thumb you CANNOT have ulcerative colitis outside the colon.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: After 50 years of medically managed Crohns, I had surgery in September for a 10" resection, followed by leakage at the repair and two infection abscesses requiring drains. After 5 weeks in the hospital, I am now 10 weeks out from surgery and recovering VERY slowly. I have little appetite and am losing weight daily, with very low energy and fatigue. I need to know if this is "normal" recovery for a 78-year-old, formerly very active in good health or could it be another problem?
A: I think we should investigate a bit. The persistent weight loss is not typical and I would get a CT to make sure the abscesses are fully gone and maybe even scope you (provided the surgical site is accessible with a scope) to make sure the Crohn’s isn’t recurring instead.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
December 2018
Q: How common is pyoderma gangrenosum in a patient diagnosed with Crohn’s disease? Does lesion ever completely heal with topical medication?
A: Pyoderma gangrenosum is one of the skin manifestations that can be seen in up to 5% of patients with Crohn’s disease. The other main skin manifestation that can be seen is erythema nodosum, painful reddish nodules on the lower legs without actual ulceration or skin breakage. Antibiotics, injections of medications into the ulcers, and topical ointments all may be used as treatments and have good response. Some medications used to treat the underlying Crohn’s can help with the pyoderma.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was diagnosed with Multiple Sclerosis (M.S). 15 years ago. I just spent 4 days in the hospital and diagnosed with UC on top of the M.S. Are the two disease related in any way?
A: Crohn’s and ulcerative colitis are considered “immune-mediated.” The same is true with M.S. With that, there is a medication that is approved for treating moderate to severe Crohn’s disease and M.S., which is natalizumab (Tysabri). This is not approved for ulcerative colitis, although it’s sister drug, vedolizumab (Entyvio) is approved for both Crohn’s and ulcerative colitis.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was recently diagnosed with a mild case of ulcerative proctitis and am having trouble finding any information about this condition. I'm frequently redirected to ulcerative colitis (which my GI has specifically said I do not have). Are the conditions different? Can you recommend any materials I can use to educate myself on my condition?
A: Ulcerative colitis comes in different forms. About 30% of patients will present with inflammation extending beyond the rectum. Some patients have ulcerative colitis of just the rectum, or last 10cm of the colon. This “proctitis” is a part of ulcerative colitis and is treated similarly like the rest of ulcerative colitis. Some patients with just proctitis can stay in remission with topical agents like mesalamine suppositories (Canasa), but others need systemic therapies with mesalamine oral products or even biologic therapy.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
November 2018
Q: I have been in a flare for the last 8 months in which I have basically experienced nothing but diarrhea every single day. Recently, I have experienced more instances of formed stools. I feel that my rectum is “out of shape” and lacks the strength to pass some of these more formed stools. I fear this could lead to constipation. Is there anything that I can do to aide in the passing of these more formed stools?
A: Even without IBD, people can suffer with poorly formed BMs, which usually has nothing to do with the shape of your colon or the strength of the colon wall. We often try fiber supplements for this. However, if you have Crohn’s or ulcerative colitis, this is a disease that can affect the rectum. Inflammation in the rectum is the most important thing to ensure that you have more formed stools. So, the answer to your question is likely that you need to work with your doctors to best control your IBD inflammation.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2018
Q: I have had Crohn's since 2003 and over the past several years I have had periods of random swelling on my feet and hands not the whole foot or hand. The size is anywhere from a marble size to golf ball size. Can this swelling be associated with Crohn’s.
A: There are extraintestinal manifestations in the skin (as well as the joints and eyes) which are related to Crohn’s disease but separate from the bowels. However, I am not sure about the random episodes of varying sizes. Nothing specific to IBD or your IBD meds comes to mind, so I recommend you follow up with your gastroenterologist.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2018
Q: After 20 years with UC, I had a total colectomy 5 years ago. I was recently diagnosed with Episcleritis. Is it common for autoimmune symptoms to occur in other organs, even after a colectomy?
A: Yes, you are at risk for other autoiummune disease in association with IBD, even if you don’t suffer from IBD any more. This is essentially what a rheumatologist does. The good news is hopefully episcleritis is easier to treat than UC and hopefully a rare occurrence for you.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2018
Q: My daughter has had Crohns disease for almost 20 years. She has been having extreme bloating after meals no matter what she eats. She can look almost 7-8 month pregnant. What can we do?
A: Bloating can be a common symptom and it can happen for various reasons. We most commonly see bloating in patients with irritable bowel syndrome (IBS). The website can help you learn more about IBS, as we see IBS in a lot of our Crohn’s and colitis symptoms. These are essentially symptoms that may occur in the absence of actual Crohn’s inflammation.
However, If she has a stricture (or narrowing) from having Crohn’s disease, sometimes certain foods, such as fibrous foods/roughage can cause bloating. With strictures—sometimes treatments are possible without the need for surgery. I would recommend follow up with your GI doctor to see if any further testing or treatments are needed.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
September 2018
Q: I was diagnosed with granulomatous colitis (Crohn's Disease) in September of 2016. I’m 19 years old and on Humira and Lialda and in remission for about 11 months. I wanted to ask about what life expectancy I can expect with my type of Crohn's disease? Additionally, how can I do my best to prevent and mitigate the risk of getting GI related or skin cancer as well as complications such as strictures, abscesses, blockages, scarring, fistulas, etc.?
A: Thanks for the question, first, wonderful news that you are in remission! The key, though, is to find out what type of remission you are in as our goal is for your Crohn’s disease to be in “deep remission” which means that your repeat colonoscopy shows complete healing with no active inflammation on biopsies. It’s important to have that relook to make sure your colon has healed as ongoing inflammation, even at the tissue level, can be associated with an increased risk of colon cancer. In terms of life expectancy, your Crohn’s disease diagnosis – especially if well controlled, should NOT impact your overall life expectancy. We do recommend that you maintain a healthy diet, follow preventative care recommendations, and see your primary care provider, gynecologist, and gastroenterologist routinely for scheduled visits, wear sunblock, get your skin exams for skin cancers, and stay on top of your vaccinations – flu, pneumonia, and HPV are the ones we would recommend for you. The most important preventative measure you can take is to keep your Crohn’s disease well controlled – the medications that got you into remission are the one you should likely stay on. Mesalamine (such as Lialda) is controversial for Crohn’s disease – you may or may not need to stay on that in the future, but I would recommend you discuss with your provider.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
July 2018
Q: I was diagnosed with UC about a year ago after suffering from constant diarrhea, nighttime urgency, and abdominal pain for the year prior. Since my diagnosis I have been consistently taking Mesalamine and 6-MP, and my symptoms have mostly subsided, but I still have not had any signs of solid stools. Is this all I can hope for in remission, or should I consider changing medications?
A: I am happy to hear that you are clinically feeling better. The real question is if you have achieved objective remission. To assess this we use blood levels for inflammation (CRP), stool studies (fecal calprotectin) and/or repeat colonoscopy. If you have signs of objective remission or mucosal healing and still have ongoing loose stools, your provider can address other causes for diarrhea. If you have objective evidence of ongoing disease activity then this might be the cause of your loose stools, they would want to consider why you have not had a complete response to therapy (mesalamine and 6MP). There are 2 likely explanations: you are on suboptimal dosing (you need more drug) or your disease is not going to response to these types of therapy and achieve complete remission. Next steps: find out if you have ongoing disease activity and work with your provider if you do to determine why. We can often check levels of 6-MP and find out if you are on enough therapy.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2018
Q: I have Crohn's Disease of the large intestines without complications. My question is my G.I. doctor wants me to have a colonoscopy every year. Is this necessary to do annually?
A: The guidelines recommend that patients that have at least 1/3 of their colon involved with disease (in your case Crohn’s colitis) should undergo surveillance colonoscopy every 1-3 years starting 8 years after disease. We base the frequency of surveillance on several factors, if your disease has been well controlled and you have histologic healing (biopsies without disease activity), no family history or personal history of precancerous changes (dysplasia) and no other risk factors for dysplasia, we might consider spacing out your interval. You can read about the recommendations in the SCENIC consensus statement or the ASGE guidelines for colon cancer surveillance in IBD patients.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2018
Q: I am having a period about every 2 weeks since being diagnosed in May. I just finished a two month treatment of budesonide (steroid). Is this typical or should I consult with my OB/GYN? I am 48 so I often get a response that I am perimenopausal.
A: Patients with active Crohn’s disease or ulcerative colitis can have variations in their menstrual patterns. So it is not uncommon to see irregular menses or absence of menses until the body is healing (improved inflammation). However whenever there is a change in vaginal bleeding, I would recommend that you consult with your gynecologist to ensure that no further work-up is needed at this time.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2018
Q: Can Crohn's disease effect my teeth?
A: The easy answer is yes, without knowing what effects you might be having. Crohn’s disease can lead to malabsorption of important vitamins and minerals that can be important for overall health and can impact your teeth as well.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
February 2018
Q: My 14 year old daughter is on 6mp and her liver enzyme level is 116. The doctor said that was high but nothing needs to be done about it. Could you shed some light on why nothing needs to be done about a high level?
A: Liver enzyme levels can be elevated for any number of reasons including: medications such as 6-MP, infection, IBD-associated liver disease and other medical conditions. A transient or mild elevation in a liver enzyme test is not typically a cause for concern, but means that the tests should be repeated to ensure that the levels have returned to normal and are not increasing. If the liver enzymes remain elevated additional blood tests and/or imaging of the liver may be warranted. It may also be useful to have the 6-MP level checked to make sure that the blood levels are in the target range.
ANSWERED BY:
Stacy A. Kahn, MD
Attending Physician Boston Children's Hospital
Attending Physician Boston Children's Hospital
January 2018
Q: I have ulcerative colitis. I have lost about 20 lbs in the last two months. Is that normal amount of weight loss?
A: I would need more information on this situation to be able to answer this question adequately.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I am 22 years old and have had Crohn's and ulcerative colitis since I was 5 years old. I just got over a bad flare up and a recent scope shows inflammation is almost gone. However, I have constant pain in the right side of lower abdomen that will not go away. The pain is interfering with daily activities. I have been in and out of the hospital and seen my doctor numerous times and no one seems to figure out how to decrease this pain. Any tips of how to deal with the pain?
A: This is a common scenario and I am glad that you brought it up. We know that there is a group of patients with Crohn’s or ulcerative colitis who have ongoing pain without evidence of active intestinal inflammation. The pain can be due to multiple causes including small bowel bacterial overgrowth, musculoskeletal pain, irritable bowel syndrome, etc. It’s important to work with your gastroenterologist to determine the cause of the pain so it can be adequately managed.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I have had Crohn's for about 15 years. I recently found out about the MTHFR (C677T) mutation that sounds like it has some relation to IBD. What information can you tell me about this mutation?
A: This mutation may have some relation to the development of IBD. It may place a patient at higher risk for clotting and it is associated with other disease processes so it is not specific for IBD. There have been over 200 different gene mutations found that are associated with IBD. The reality is that most patients do not have any of these mutations because IBD involves a complex interplay between organisms in the gut, environment factors like smoking, and an overactive immune system.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
October 2017
Q: Does Crohn's Disease affect your menstrual cycle? I used to have regular cycles but for the past two years I have had about 4 cycles. Could the change be caused by the Remicade or steroids I'm on?
A: Crohn’s disease – particularly when it is active with associated weight loss, anemia, and decreased nutrition can result in abnormal menstrual cycles or missed cycles. When the anemia, inflammation and weight are corrected, the cycles do tend to return. The medications used to treat Crohn’s disease don’t typically have a direct effect on the period. However, I would definitely discuss this with your gynecologist to make certain there aren’t other additional issues such as endometriosis or fibroids or hormonal changes that can result in abnormal periods.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2017
Q: I was diagnosed with ulcerative colitis in 2013 and then indeterminate colitis in 2015. I was put on prednisone and azathioprine. My doctor left and I was sent to a new doctor. They ordered colonoscopy and CT which came back showing no IBD. Can this happen because of the medication? All previous scopes, biopsies, and scans since 2013 have come back positive for IBD. I am very confused. Is it possible to get different diagnosis over time?
A: This is a very interesting thing that we have been seeing in some patients. We call it histologic normalization.
We recently published something from the University of Chicago with our findings in many patients. See link below.
Overall conclusions here: https://www.ncbi.nlm.nih.gov/pubmed/28238954.
Histologic normalization of colonic mucosa can be used as a clinical endpoint for patients with UC. We associated histologic normalization with increased odds of relapse-free survival compared with endoscopic healing or histologic quiescence. Further studies are needed to determine whether histologic normalization should be a goal of treatment for patients with UC.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2017
Q: Can Crohn's Disease or Humira or both be linked to gum disease and skin abscesses?
A: Good question.
Crohn’s disease can be associated with gum disease. Gum disease would not be a common association with Humira.
With regards to skin abscesses, if you’re referring to abscesses around the anal region, then Crohn’s disease (but not Humira) can definitely be associated with this. As far as skin abscesses on other parts of the body, this can occur with immune suppression of any kind including Humira. If your gastroenterologist has not evaluated the skin sores already, it would be a good idea to speak to him/her.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I was told one year ago that I had ulcerative colitis. Is constant pain, cramps and an extended abdomen common symptoms of the disease?
A: Ulcerative colitis can present with a variety of symptoms including abdominal pain and bloody diarrhea. However, symptoms don’t always indicate that the ulcerative colitis is active. The reason is that several other disorders can also cause the symptoms your describe. Your doctor through various objective tests (i.e., imaging, endoscopy, and labs) can determine if it is your ulcerative colitis or another disorder that is contributing to your symptoms.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2017
Q: In ulcerative colitis patients, do most cases of colorectal cancer start as polyps or dysplasia? How fast does dysplasia develop and grow to cancer?
A: In patients with IBD the sequence of polyp to cancer, if related to IBD, may not follow the same sequence as regular polyps. Colorectal cancer in IBD starts with some type of lesion, but these may be very difficult to see. The timing of dysplasia going to cancer may also be accelerated. For this reason, we recommend frequent screening – every 2 years in all patients after 10 years of disease with Ulcerative Colitis, and in Crohn’s Colitis if more than one third of the colon is involved. Patients with Primary Sclerosing Cholangitis (PSC) need yearly colonoscopies as their risk for colon cancer is particularly high. As lesions predisposing to cancer in IBD may be flat rather than look like polyps, it is also particularly important to have the best preparation possible, and to have a colonoscopy performed by a physician experienced in the care of IBD patients.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: I have CD for many years. I recently had colonscopy #5. Since then (3 weeks) I'm feeling like I'm still doing the prep!! Urgent rush to the toilet at all hours day and night for a big rush of blood or brown water! How do I make this symptom quit?
A: I recommend calling your provider to discuss whether you are having a flare of your disease or if you may have concurrent c.difficile infection. Colonoscopy preparations should not cause your IBD to flare, but may alter your gut flora. I would recommend discussing your symptoms with your provider.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
January 2017
Q: My 62 year old mother was diagnosed with UC a year and a half ago and has developed pyoderma gangrenosum on her leg. She has four lesions ranging from the size of a nickel to the size of tennis balls. She recently started Humira. How long on average does it take for the lesions to heal? Are there cases where the skin condition does not heal?
A: Pyoderma gangrenosum is a rare skin condition that can be associated with UC. Because it is rare, there is not much data available. We do know that the rates of response to Infliximab (Remicade) and Adalimumab (Humira) have been high, though unfortunately, nothing is 100%. The information we have is limited to a few people, but it suggests that patients often saw some improvement with a few weeks of starting an anti-TNF medication like infliximab or adalimumab. However, complete healing often takes several months.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
January 2017
Q: My daughter has hidradenitis suppurativa which the doctors think is associated with the Crohn's Disease. She has flare ups in her vaginal area as well as her armpits. Can this be a symptom of Crohn’s disease and if so, how is it treated?
A: HIdradenitis suppurativa(HS) is not a symptom of Crohn’s disease, but there does seem to be some relationship between the two disease—people who have one of the two conditions are more likely to also have the other. HS is often treated by dermatologists, as it is a condition of the skin. Some possible treatments include antibiotic creams, steroid injections, or oral antibiotics. For more severe disease, treatment with medications that are also used for Crohn’s disease, such as infliximab (Remicade) and adalimumab (Humira) have also been used.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2016
Q: Please discuss medical cannabis vs opiates for pain management. I have RA as well and the NSAIDs are a nightmare for my Crohn’s.
A: While some patients report relief of their abdominal pain and nausea with medical cannabis, there is growing evidence that there may be negative effects on the brain - especially with long term use. These can be memory and attention problems, slowed reflexes (when driving) and for some patient development of anxiety, depression, and feeling paranoid. At the moment there is not enough evidence for the medical community to say how safe medical cannabis is but it is being studied.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I have Crohn's and have joint pain that is constant, despite my guts being in remission from Humira. I am interested in finding non-drug ways to cope with the pain. I've had some success with acupuncture. What alternative approaches have been shown to help with IBD related joint pain?
A: There is some evidence that acupuncture can help patients with irritable bowel syndrome. For IBD, there are small studies showing benefit of yoga and mindfulness meditation.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: How do you deal with chronic mouth ulcers
A: There are numbing agents that you can swish in your mouth that your gastroenterologist can tell you about. Hypnosis can also be very useful for helping ulcers.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: Can you talk about the impact of disrupted sleep on Crohn's disease and what is being done to help patients who have these issues (who aren't on steroids)?
A: Disrupted sleep can make IBD worse- worse inflammation, more pain, and also predisposes people to more anxiety and depressed mood. Disrupted sleep can be having trouble falling asleep, multiple awakenings or not getting enough sleep. Many medical sleep societies recommend all adults need 7-9 hours per sleep a night.
Most important things to do to help sleep disruption is doing enough physical activity during the day to be tired by night, good sleep hygeine (so no bright lights including computers or cell-phone screens in bed) and going to bed and getting up at the same time each night. Sleep can now be monitored on gadgets like fitbits or also apps like sleepcycle.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: For pain management does an IBD patient need to go to a pain management specialist or solely to the gastroenterologist or both?
A: Different GI clinics or practices have different ways they handle pain management. Some gastroenterologists have algorithms that they try first. Many have psychosocial resources available who specialize in pain. Pain experts can be counselors or pain anesthesiologists who can sometimes have success with nerve blocks, TENS units, or vagal nerve stimulators- though these latter techniques have not been well studied.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: Part of the discomfort I feel is caused by a feeling of moving around in the intestine - it gurgles and can be quite loud. Doctors seem to dismiss this symptom but it is actually one of the worst parts of the illness (at least for me). It makes it hard to concentrate on much of anything when your insides are rolling. Is there anything you might suggest for easing the discomfort?
A: To ease the discomfort you describe, you might consider distraction techniques. These are either activities you can do to forget about the gurgling or mind techniques such as meditation or hypnosis. To learn about certified medical hypnotists in your area, you can go to the website of the American Society of Clinical Hypnosis. There are also some good apps available to help teach meditation like headspace.com. Finally, there are educational stress management websites such as www.gameplan.com that can give you ideas too.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
September 2016
Q: I recently had a small bowel series, it showed that I had focal narrowing in small intestine with possible structure findings concerning for underlying IBD. They did an MRI a week later, nothing showed up on MRI. I'm so frustrated. I have been struggling with trying to find out what's going on with my stomach for years now. After small bowel series I thought I finally had an answer. Now I'm back to square one. Is it still possible I had inflammation and then it wasn't present at time MRI?
A: I can understand your frustration. Typically, an MRI is a better test for a stricture than a small bowel series. It may be that the small bowel series findings were falsely positive. If there is ongoing concern for IBD, there are potential lab tests that may be helpful as well.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I have UC diagnosed in 2008. It got very bad, 30 plus episodes of diarrhea a day and heavy bleeding. Now I'm struggling with constipation and a hard distended stomach as well as 10 plus episodes per day of passing just blood and tissue. I take stool softeners to keep things normal and reduce pain and bleeding. I am concerned about a blockage or maybe Crohn's in addition to UC, but my imaging doesn't seem to support either of those things. Is what I am experiencing normal?
A: Thanks for your question. It’s difficult to say exactly what may be going on without having more information. If you’ve had a colonoscopy and your UC is controlled (i.e., there is no active inflammation), there may be other causes for your altered bowel movements. The constipation may be caused by medications, irritable bowel syndrome, small bowel bacterial overgrowth, etc.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: How often should a 70 year-old male with Crohns disease have a colonoscopy?
A: This is a very good question. Unfortunately, the answer is more complicated. It’s important to realize that the goals of Crohn’s disease treatment may be different based on a patient’s overall health. Advanced age can occasionally be associated with declining health but not always. Generally, in older age, we treat Crohn’s disease to control symptoms. In younger age (i.e., age <40) , we treat Crohn’s disease to heal the intestinal inflammation and control symptoms. In general, patients who are diagnosed with Crohn’s at age ≥60 have the same risk of developing colorectal cancer as patients diagnosed with Crohn’s at an earlier age.
Colonoscopy in Crohn’s disease may be performed to evaluate intestinal disease activity or evaluate for colorectal cancer from long-standing Crohn’s disease and patient age. There is no consensus on this approach but in my older patients regardless of whether they have IBD or not, I do colon cancer screening colonoscopies if the patient can safely undergo surgery in case we discover malignancy. In older patients in whom I am considering a colonoscopy to evaluate for active inflammation, I take into account the patient’s other illnesses before proceeding.
I would speak to your provider about the risks and benefits of performing a colonoscopy.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: I often hear of ulcerative colitis, but what are microscopic colitis and lymphocytic colitis? Are these types of IBD? Can a patient have both UC and another type of colitis?
A: Lymphocytic and collagenous colitis are the two types of microscopic colitis. They fall within the spectrum of inflammatory bowel disease but behave very differently than Crohn's or ulcerative colitis. A patient generally has either Crohn's or ulcerative colitis or they can have microscopic colitis but not both.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Can microscopic colitis change to ulcerative colitis? Or just misdiagnosed? And any relationship between UC and rheumatoid arthritis?
A: And any relationship between UC and rheumatoid arthritis? Microscopic colitis is made up of collagenous and lymphocytic colitis. I have seen microscopic colitis patients who then go on to develop Crohn's or UC but this is uncommon. Microscopic colitis and IBD are diagnosed and behave differently though and the diagnosis should be more clear after an evaluation. UC and rheumatoid arthritis can be found together as they are both autoimmune disorders. You can learn more about microscopic colitis here: http://www.ccfa.org/resources/microscopic-colitis.html.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Do you use the fecal calprotectin test to monitor your patients GI inflammation? If so, at what intervals?
A: 90 days? I do use fecal calprotectin as a marker for inflammation. There's data that shows it can help predict a flare. I know GIs who use it every three months. In my practice, my use is based on the individual patient.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
August 2016
Q: Are there any issues with birth control pills exacerbating UC or Crohn's symptoms in women?
A: Estrogen-containing birth control pills have been associated with development of Crohn's in the past and recently there was a study suggesting that it is associated with a worse course of Crohn's. I would discuss this with your GI.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
May 2016
Q: My daughter was diagnosed with cd Sept. 2015 and has been on Remicade but a new symptom we notice sometimes she small leaks from her rectum. Is this a normal side effect?
A: I would recommend that your daughter’s gastroenterologist examine her perianal area at their next visit. Crohn’s disease can cause fistulas (connections from the rectum to the skin), and a physical exam could check for any sign of fistula. Crohn’s disease can also cause skin tags in the anal canal that may contribute to leakage symptoms. This would also be seen on physical exam. I would recommend watching for fever, pain, or redness in this area as a sign of a developing infection. If that occurs, call your gastroenterologist to be evaluated.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I have both Crohns and Candidiasis. The diets for each seem to be mutually exclusive. I've been eating the same few foods for two years and am going nuts. What can I eat?
A: I find that diet is such an individual topic that can not be generalized to groups of people. There is no diet identified that clearly causes or treats Crohn’s disease when studied in groups of patients. I would recommend that you avoid foods that give you symptoms. It sounds easy, but can be challenging to try to identify trigger foods. Adding foods back one at a time is the best strategy. A food diary can often be helpful as well. The CCFA has published a patient handout to help give advice (http://www.ccfa.org/resources/diet-nutrition-ibd-2013.pdf) and you may find it beneficial to meet with a registered dietician to help customize your diet.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
July 2015
Q: I am 15 years post IPAA surgery and have developed iritis. I am told that it is an extra intestinal manifestation of UC. Is there any information available about these or other symptoms developing after colectomy? Also what type of specialist should I consult to deal with the systemic part of UC, as my GI feels only qualified to treat the digestive system? I of course also have an eye specialist, but it seems like there should be someone coordinating the treatment of the overall disease
A: There are reports of iritis occurring after IPAA surgery for UC but this not commonly. Iritis can occur with other medical conditions than UC so the eye doctor in collaboration with the primary care provider can decide on any further appropriate evaluation. If you are not having any gastrointestinal symptoms with the iritis, then the eye specialist (such as an ophthalmologist) is an appropriate person to address this issue. Otherwise, unless there are other symptoms after the IPAA for UC, you do not necessarily need another provider to manage your case.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I had a colonoscopy today my doctor said my Crohn's is in remission. However 3 weeks ago I had imaging test and it showed active disease. I'm confused . I had Crohn’s for 30 years and never been in remission and I don't feel any different. What are the definitions for remission and active disease?
A: Thank you for your question. This is a question that comes up often in different forms. Active disease refers to ongoing active inflammation of the intestinal lining, which can be detected by labs, imaging, and/or colonoscopic evaluation. These diagnostic tools often agree with one another but not always, and if the location of active disease is accessible by colonoscopy (i.e., in the colon or terminal ileum), this tool remains the gold standard for evaluation. Ideally, the definition of remission in Crohn’s disease is the combination of no active intestinal inflammation and an absence of disease-related symptoms. However, because symptoms associated with Crohn’s are also present in other
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: Is the IgA and IGa test a good way to diagnosis Crohn’s disease, when all other tests were negative for IBD?
A: Immunoglobulins or Ig are not typically used in the diagnosis of Crohn’s disease. The three scenarios that this test may come up in the evaluation for IBD are:
1) Evaluation for celiac disease, which is associated with IBD, as celiac disease and IBD can have overlapping symptoms
2) Evaluation for common variable immune deficiency (CVID) which can have overlapping symptoms with IBD
3) As part of an antibody panel used by many providers (aka as the IBD-7 panel). These panels can include antibodies like ASCA, ANCA, Anti-ompC, etc, and are often associated with IgA or IgG. This antibody panel is rarely helpful for a diagnosis of IBD, especially when used alone.
IBD is typically diagnosed based on a combination of clinical symptoms and history, endoscopic evaluation (with biopsies if needed), imaging, and labs.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: Crohn's Disease has been a part of my life since 1977. I have had a total colectomy with rectum removal and of course ileostomy. I am currently on no meds except b12 every other month. What is the likely hood that the disease will return? Is there any research on this?
A: Great question. There is some research on this topic but it depends on a couple different things. If before your total colectomy and end-ileostomy your disease was isolated to your colon, then the risk of recurrence with an end-ileostomy is low, about 10-20% over 5 years. If before surgery, the colon inflammation was associated with small bowel inflammation or inflammation around the anal area (i.e., abscesses or fistulas), the risk of Crohn’s disease recurrence would be higher.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2014
Q: I was diagnosed with Crohn's Disease 17 years ago. The first 12 years were ok with, rarely a flare up. The past 4-5 years I've been experiencing many flare ups and problems. In October 2013 I had an Ileostomy surgery. Then last month a surgery to remove 1 foot of intestine. There were plans to reconnect but Dr. was unable to reconnect as there was too much inflammation. Therefore another surgery is planned. I’m worried about all these surgeries. What are the risks of so many surgeries?
A: Any operation on the abdomen is associated with risks during the immediate period following the operation as well as the long-term risk (5%) for blockage of the small bowel secondary to scar tissue creating adhesions. The small intestine is responsible for absorbing nutrients from the foods we consume, and an adequate length of small bowel is needed to ensure that an oral diet can maintain a healthy state of nutrition. In patients with Crohn’s disease, repeated operations to remove segments of the small intestine can result in a condition called short-bowel syndrome that sometimes requires TPN to supplement the patient’s nutrition by direct delivery of nutrients into the blood stream. Although operations for Crohn’s disease are generally avoided unless medical therapy is deemed inappropriate or ineffective for a variety of reasons, several procedures such as strictureplasty can be used as an alternative to removal of the small intestine in an attempt to prevent the development of short-bowel syndrome
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
June 2014
Q: I am scheduled to have 5 cm of my ileum removed, which is very small compared to what many people have removed! However, I learned that they are going to remove my appendix at the same time. Why? Is that necessary? What if down the road we find out it is good for something?
A: The last segment of the small intestine (terminal ileum) leads into the first part of the large intestine (cecum) and the junction between the terminal ileum and cecum is called the ileocecal valve. Crohn’s disease commonly affects this terminal ileum and/or cecum. The appendix arises from the base of the cecum and its role is poorly understood.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
April 2014
Q: I have had several surgeries. I have had a colostomy/ileostomy and a Hartmann’s pouch since 1989. Just recently, I am having a discharge from my rectum several times each day, and my doctor has no answer. What is causing this? Prednisone seemed to help, while I was on it for two weeks … any ideas?
A: The bowel lining is called mucosa because it secretes mucus. Patients who undergo creation of a colostomy or ileostomy without removal of the rectum can intermittently pass this mucus. Some people will pass mucus a few times each day while others will rarely discharge any mucus; most patients’ frequency is found to occur somewhere between the two extremes. The out-of-circuit bowel can also be inflamed secondary to the patient’s underlying disease or lack of mucosa nutrients normally contained within the waste. This inflammation can cause passage of blood tinged mucus that is usually of little clinical significance.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
April 2014
Q: Does a CT-Scan show Polyps and diverticulitis?
A: CT imaging of the abdomen and pelvis can show either polyps or diverticulitis. A special imaging technique called CT colonography generates three-dimensional images to examine the inside of the colon that is otherwise only seen with colonoscopy. CT colonography is merely a diagnostic procedure, and a colonoscopy is required to remove any identified polyps. CT colonography is sometimes unable to differentiate stool from smaller polyps and may not be as reliable as colonoscopy. Lastly, CT colonography is generally not recommended for patients who have active Crohn's disease or ulcerative colitis because of an increased risk of perforating the colon.
Standard CT imaging is used to diagnose diverticulits, which represent an inflammatory complication of pre-existing diverticulosis.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: When my Crohn's disease is flaring, I shake, or vibrate so bad it wakes me up. I'm not diabetic. Is this from Crohn's?
A: Chills or rigors are episodes of shaking or shivering that can be associated with a fever. It is an automatic response that occurs for a variety of reasons, and is often a sign that suggests inflammation or infection such as that seen with active Crohn’s disease. Shivering involuntarily occurs when someone feels cold and acts to raise the body’s temperature. The trigger point at which this response occurs is set in the brain and has been described as an internal thermostat. With inflammation or infection, chemicals called pyrogens reset the trigger temperature. This in turn tricks the body into feeling cold and shaking occurs to raise the body’s temperature.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I was diagnosed with Crohn's about a year ago and by most markers/symptoms I'm in remission yet continue to have periods of fatigue that I didn't have prior to my diagnosis. Is it common/normal to struggle with tiredness even though in every other way I'm fully in remission?
A: Fatigue is a symptom commonly seen in patients with Crohn's disease symptom and can exist for several reasons. While a flare of Crohn’s disease can cause someone to feel fatigued as his or her body is fighting inflammation, fatigue can also occur when the disease is in remission for other reasons such as anemia, depression, or medications. Anemia linked to the decreased production or gradual loss of red blood cells is commonly seen in patients with Crohn’s disease and can lead to fatigue. Chronic diseases such as Crohn’s disease are also often accompanied by emotions such as sadness or depression, and these disorders can cause fatigue. Lastly, fatigue can be a side effect associated with certain medications used to treat Crohn’s disease such as methotrexate, sulfasalazine, and steroids. Any feelings of fatigue should be discussed with a physician so he or she can look for the cause and recommend appropriate treatment. It is also suggested that patients with fatigue eat a healthy diet, exercise on a regular basis, and get an appropriate amount of sleep each night.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is cause and treatment for black stool?
A: Black stools can occur for a variety of reasons in patients with Crohn’s disease and appropriate treatment depends upon the cause. Certain medications such as iron and bismuth or particular foods that are blue, black, or green colored can also cause black stools. More importantly, black stools can occur because of slow bleeding from inflamed bowel lining; the red blood turns the stool black as bacteria in the stool interact with the blood. The source of bleeding is usually located in the stomach, small intestine, or right colon. Bleeding closer to the rectum or anus more commonly causes the stool to be red instead of black. It is important to discriminate between black stools caused by medications and foods versus bleeding from the bowel wall. This symptom, especially if it is new in onset and persistent, should be reported to a physician so that proper evaluation and treatment can be initiated.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is the best way to diagnose an adhesion in the small bowel? Should you use small bowel X-Ray series, CT Scan, MRI, and/or colonoscopy?
A: Small bowel adhesions are commonly seen in anyone who has undergone prior abdominal surgery, but adhesions cause difficulties only in a minority of patients. When problems do arise, they are typified by bouts of cramping pain, nausea, abdominal distention, and a change in bowel habits. Patients with Crohn’s disease can experience similar complaints when active disease affects the small intestine. Colonoscopy cannot generally identify small intestine adhesions because the procedure inspects only the inside and not the outside of the large bowel. Imaging studies such as MR enterography and CT enterography are usually more accurate than a small bowel series in their evaluation of the small intestine. However, none of these tests can easily see adhesions. Instead, they identify the consequences of these adhesions such as an abrupt angling or abnormal dilation of the involved bowel. One benefit of MR enterography over the other modalities is that no radiation exposure is required for the test.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: What is ulcerative enterocolitis and what part of the small and large intestine is involved? Is it more extensive or serious than pancolitis?
A: The inflammation associated with ulcerative colitis typically begins in the last part of the large intestine and then spreads up the bowel to sometimes affect the entire colon; this complete or near-complete involvement of the large intestine is called pan-colitis. Ulcerative colitis does not usually impact the small intestine unless it is limited to the last few inches in a condition called backwash ileitis.
More extensive inflammation of the small intestine is called enteritis and it is not seen in patients with ulcerative colitis unless they have another disorder such as an infection superimposed on their existing ulcerative colitis. On the other hand, patients with Crohn’s disease can demonstrate inflammation of both the small and large intestine and this is referred to as enterocolitis.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
Special Populations
February 2023
Q: · My son was diagnosed with a Crohn's flare. He started Remicade and methotrexate & having his 3rd infusion next week. More prednisone was also prescribed since his symptoms haven't improved (his doctor said the symptoms might also be side effects of the Remicade). He sleeps all the time, can't work, and is depressed. My son believes the Remicade isn't working and should try Humira. Do you have any recommendations for him?
A: Going through a flare is physically and emotionally difficult. Also, symptoms associated with the flare can worsen or contribute to symptoms of depression. It is recommended that all symptoms be discussed with his IBD specialist. While there may be adjustments in his medication regimen, he may also benefit from a consultation with a GI mental health provider to aid with managing the complexities of IBD. They will assess for severity of mood symptoms and help create a treatment plan to aid in improving mood, fatigue and overall functioning. To locate a mental health provider, encourage your son to speak with his IBD provider as that provider may have someone on the team or have a local resource. He can also use this directory: www.romeGIpsych.org.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
January 2023
Q: I am wondering if there are ways to help reduce my stress levels related to having a chronic illness in the workplace. Should I tell my supervisor that I have IBD? I feel overwhelmed at times at work and feel like I am not able to complete the task needed on time. I am unsure how to cope.
A: Stress can have a significant impact on our mind and body. Work is one aspect of life that can contribute to stress for various reasons. In people with chronic GI conditions stressors related to work can come from the actual job demands, while also GI-specific stressors such as physical symptoms, access to bathrooms, navigating medical appointments and more. If aspects of IBD are impacting you at work, it is likely time to identify who at work can assist with navigating your rights as someone in the work force with a chronic illness. Depending on your needs and work environment, you may be able to provide very basic information about your needs and the impact of your health on your work. You can share what you feel comfortable sharing. You may benefit from working with your medical provider and employer to complete FMLA (Family and Medical Leave Act) or ADA (Americans with Disabilities Act) paperwork to receive reasonable accommodations. Having these accommodations in place can assist with stress management by reducing some of the burden if you need a day off for the management of your health. You can find important information about your rights as a person with IBD here: https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/employment-and-inflammatory.pdf
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2022
Q: My son was diagnosed with Crohn's at the end of March 2022. He was put on Humira, developed antibodies and was switched to Remicade. He received his 3rd induction dose of Remicade on Sept 8 (his levels look good with no antibodies, and C-reactive is back to normal). He is still having diarrhea 1-2 times per day with some cramping (down from 6-7/day early summer). When should we expect these symptoms to improve?
A: Thank you for your question. I am glad that your son is feeling better, but I you are correct, true clinical remission (absence of symptoms) is the first goal of therapy. Sounds like he is responding to the therapy both by lab data (normal CRP) and symptom improvement. I am not sure how long ago he received the third dose but, he should stay at least as good, if not further improve by dose four. This is important since that is the first “maintenance” dose and is likely scheduled eight weeks after the third. Likely, your son’s gastroenterologist will be checking an infliximab level then to assure the dose is optimized for good disease control going forward.
Ultimately, the next goal of treatment is to assure healing of the lining (mucosa) of the bowel. This can first be measured with a stool test for inflammation (calprotectin) and later, by repeating imaging with an MR enterograpy (MRE) or repeat colonoscopy. Studies have shown that healing of the mucosa is associated with our best long-term outcomes, so it is very worthwhile to look for this. Also, if symptoms persist or recur, such follow up testing would help clarify whether active Crohn’s disease is still contributing.
Hope he is feeling back to himself soon!
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
August 2022
Q: My 14 year old has been in "remission" for about 1 year now and still receives the remicade infusions every 8 weeks, but with this new school year she is now experiencing sort of panic attacks/anxiety. I've made her appointment with pediatrician but looking to see if this is common in youth with an IBD?
A: There can be many anxiety provoking things that happen around back to school time for kids (schedules, lockers, new friends, school changes, etc). So, first it is important to normalize this for kids with and without chronic illness. For those with IBD, there may be some additional stressors that I would encourage you to explore with your daughter. Dr. Brad Jerson is a pediatric GI psychologist who just published a great article recently about school considerations that can impact those with GI conditions (https://www.healio.com/news/gastroenterology/20220823/back-to-school-with-digestive-disorders-parentschool-partnership-key-to-patient-support). Some of the factors to consider include bathroom access, dietary sensitivities, navigating your health with your peers and more. All of this can progress from worry to anxiety to panic if unaddressed. It is a great idea to chat with your pediatrician, and consider talking with a GI psychologist (if you are near one) or a general mental health provider who can assist with anxiety management.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
August 2022
Q: I have a 19 year old son who is in college, he is very nervous about sharing a room with someone who doesn’t understand his illness. He is not always vocal about having IBD and does his best to manage without many people knowing when he is in pain, etc. How would you recommend he handle the situation with having a roommate and living with IBD? I feel like he may be having anxiety related to this.
A: I would say that the anxiety of having a roommate for the first time is common for most college students. Normalizing this for him may be a good place to start. It would them be helpful to work on language that he can become more comfortable with around talking to his roommate (and friends) to help them understand how IBD can impact his life. While discussing bathroom issues can feel uncomfortable, once he gets the conversation about his needs out there, it will likely help to reduce the anxiety. He doesn’t have to be graphic or overly detailed but help give some context to why he may spend some extra time in the bathroom, need to use the bathroom urgently, need time for rest or eat differently. It typically takes a lot more energy to avoid these types of conversations over time than it will to have the initial conversations and hopefully have them be well received. He may also see that his roommate can be supportive and assist him when and if he needs that.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
August 2022
Q: Hello. I am a mom of a teen daughter who has been diagnosed for just shy of a year. She is often times staying in her room, avoiding friendships, and even refusing to eat at times. I am worried she might be depressed related to having a chronic illness. Are there things I can do to help as her mom? Ways to teach her to cope with her illness? Anything would help!
A: Thank you for being curious and aware of these changes in your daughter. A new diagnosis of a chronic disease can lead to many life changes, new normal and at times, fear about the future. Watching for signs of anxiety and depression are important. It does sound like your daughter is experiencing some symptoms of depression. I would recommend speaking with her gastroenterologist about whether there is a GI psychologist or GI-specialized mental health professional for her to consult with. If not, you can check www.ROMEGIPsych.org or look for a mental health provider who specializes in working with teens, chronic illness, depression and anxiety via www.psychologytoday.com or another via the Crohn’s and Colitis Foundation resources.
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
June 2022
Q: My 12 year old son is now facing a ileo colectomy. What can we expect afterwards? How can I help to make the procedure and healing time go well?
A: Surgical intervention is a big step at any age so congratulations on being proactive in helping him (and therefore you!) through this.
First and foremost, these are great questions for you to ask your surgeon and their team. I assume you are referring to an ileocecectomy (removal of a portion of the last part of the small intestine along with the first part of colon = cecum). This is the most common surgery performed on those with Crohn’s disease. Accordingly, your son’s team likely has significant experience with this and can assist answering your questions. The hospital may also have a Child Life team and other supports—feel free to use them to get yourself educated and your son educated at an age appropriate level. There may also be other pediatric patients and their families who have been through the same experience who have volunteered to speak to others and share experiences with the Power of Two program. Feel free to take advantage of all such resources.
Most commonly, this surgery is now performed laparoscopically (minimally invasive surgery) which allows early hospital discharge and much less post-operative pain than in the past. The surgical team will lay out a plan for return to full activity which will slowly occur over a few weeks. Also, keep in mind that while the surgery will remove the bowel already damaged by the Crohn’s, it does not cure the condition and there will need to be a plan to prevent disease recurrence after the surgery. So be sure to speak with your medical team so that you are fully aware of the post-operative plan to prevent disease recurrence. Also, in addition to using medical therapy to prevent recurrence, it is recommended that a colonoscopy be performed within 6 months of the surgery to assure that the plan is effective and that Crohn’s inflammation has not recurred.
Best wishes for a rapid and full recovery!
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
June 2022
Q: My son has been on Remicade since 2013, he has Crohn’s. He has been in remission. He has had issues with acne since he started the medication. Since switching to generic we noticed he began to get cystic acne. He had to have them removed. He is 26 yrs old and is now dealing with all these cysts. Frequent visits to dermatologist, having to get 4 steroid shot in cyst. Do you think this is a side effect from the medication?
A: Thank you for the excellent question. It looks like he started infliximab around age 15 years which is a very common age for acne so this should not be seen as a surprise. However, your concern that this has persisted to this degree is noted.
Traditionally, the main medication associated with acne is steroids but it looks like his medical team has done a great job staying away from that. Whether he is receiving originator infliximab (Remicade) or a biosimilar should not make a difference here. Dermatologic issues can be seen with anti-TNF therapy and while acne is not the most common, it is a consideration here. Some of the newer biologics approved for Crohn’s affect the skin to a much less degree and he should be encouraged to have a discussion about this with his team. Additionally, since you discuss this as cystic with the need for removal from his buttock, he should at least confirm that this is truly acne and not a condition called Hidradenitis Suppurativa (HS) which is sometimes associated with IBD (especially in cigarette smokers!) and would require a very different approach.
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
May 2022
Q: My daughter has taken Humira and is now Stelera for her Crohn’s. It seemed after her injection she develops a localized reaction at the site that last 3days. She takes Zyrtec 3 days prior and 3 days after. She takes Benadryl and Tylenol pre med the injection. She has no antibodies to the drugs and it seems it may be from the filler in the injections. Are there any medications that do not contain these fillers. Or is there another pre med she can take. At this time she is unable to Remicade.
A: I hope the Stelara is working and that your daughter’s Crohn’s is in deep remission.
You are describing a local site reaction, and these can be quite common. You are correct that this may be from the non-active ingredients (we call these excipients rather than fillers) or it could be a local reaction to the medication. One non-drug interventions that helps with this is to assure that the site of injection is rotated from dose to dose. Additionally, we have had great success with “conditioning of the injection site” by applying an ice pack for 10 minutes prior to the dose. Regarding medications, if it is not painful, she may not need the Tylenol and the Zyrtec or a Claritin may be enough to allow her to stop the Benadryl which often times causes drowsiness in adolescents.
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
May 2022
Q: My 16 year old daughter was diagnosed with UC in October. She has taken steroids and Mesalamine with no relief from the bleeding. They are now wanting to put her on Humira. I am nervous about putting her on biologics and was wondering what some of your experiences have been with using biologics? Can she achieve remission?
A: The PROTECT study was a prospective, multi-center, NIH funded study of newly diagnosed children and adolescents with ulcerative colitis (UC). Important findings of this study included the fact that 40% of pediatric UC will be maintained by mesalamine. Which means 60% of children and adolescents with UC will need biologic therapy to maintain steroid-free remission of their UC. In truth, you daughter is already on the most toxic medication we use for UC, that is, Prednisone!
In addition to anti-TNF therapy such as Humira or Remicade, Entyvio (vedolizumab) may be an option for her. This is administered intravenously like Remicade but the main target is the proteins in the bowel which assist movement of inflammatory cells from the blood stream to the intestine making the effect more specific to the bowel (“gut specific”). In addition to decreased systemic effect and being a more targeted therapy, there was a head-to-head comparison trial of Entyvio vs. Humira and Entyvio showed some superiority in this trial (called VARSITY). Officially, Entyvio is approved for ages 18+ but there is substantial pediatric experience and in light of the findings in VARSITY, we have had good success getting Entyvio for our less than 18-year-old patients.
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
May 2022
Q: My 23 year old son was diagnosed with severe ulcerative colitis. My question is what to expect after we get his current situation under control. The priority is getting him better but am wondering if he will be able to return to his job as an apprentice lineman when he is in remission. He works long hours outside in the heat? I am worried about him getting dehydrated spending so many hours in the sun.
A: I am sorry that he is having to go through this and want to reassure you that remission = normal. So your health-related concerns would be the same as for anyone else who has a demanding job. Your priorities are exactly correct—first the remission. Once that is there, he should wear sunscreen, cool clothing and stay well hydrated—same as everyone else on the line!
ANSWERED BY:
Joel Rosh, MD
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
Director, Pediatric Gastroenterology Vice Chairman, Clinical Development and Research Affairs at Goryeb Children's Hospital/Atlantic Health Professor of Pediatrics at Icahn School of Medicine at Mount Sinai
November 2020
Q: My son is 7 and just diagnosed with Crohn's. His disease is severe. The doctor gave us a choice Humira or Remicade. How do you decide about which medication to choose?
A: This is a very common question. In my practice, we stress the importance of shared decision making between the physician, the parents and the most importantly, the patient. When selecting a new medication, it is key to be completely informed. As both adalimumab (Humira) and infliximab (Remicade) target the same inflammatory protein (TNF-alpha), their efficacy (remission rates) are essentially equal for Crohn’s disease. In addition, the safety profile are similar.
How are they different. Adalumumab is given as an injection (typically in the lower abdomen or upper thigh) at home and infliximab is given as an infusion requiring an intravenous (IV) catheter with each dose. Adalimumab is injected every 2 weeks (although some patients require weekly dosing). The first 3 doses of infliximab (induction) are given over 6 weeks with maintenance doses given every 8 weeks (some patients may require infusions every 4-6 weeks). Infliximab infusions require outpatient visits at infusion centers with the infusion lasting 1-3 hours. Factors to consider between the two: convenience (home vs. infusion center) and patient preference to medication delivery (injections vs. IV starts). At our center, all patients starting infliximab receive the first 5 doses over 3-hours at our infusion center. If the infusions are well-tolerated, we provide the option of receiving those infusions over 1-hour and at the patients home with a nurse from the home health agency.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: I am 15 and my dad has Crohn’s. Recently I’ve started showing symptoms and I know I need to tell my parents so I can see a doctor and find out if that’s what it is, but I don’t know how to tell my parents. I am terrified and I do not know what to do.
A: Whenever a parent is ill, it is natural for a child to be concerned about their own health. Although we know a family history of Crohn’s may increase the risk of Crohn’s disease in their children, it is also important to know that many of the signs and symptoms that are associated with Crohn’s disease are also shared with other illnesses, such as gastrointestinal infections (bacterial or viral causes), irritable bowel syndrome (IBS) or Celiac disease. In my practice, it is common to see siblings or children with a family history of Crohn’s disease and find out (by examination or testing) that the primary symptoms are secondary to another cause and not Crohn’s disease.
In your situation, it is important to discuss these symptoms with your parents so they can make an appointment with your regular doctor. Your doctor will carefully listen to your symptoms, check your growth (height and weight), perform a physical exam and potentially order blood or stool tests to determine the cause. The sooner a diagnosis is made, the faster a treatment can be offered. If any of the symptoms are concerning for Crohn’s disease, your doctor will make an appointment with a gastroenterologist, a doctor specialized in diagnosing and treating Crohn’s disease. It’s really important to know that in the present day (2020), there are many more medication and dietary options to better manage Crohn’s disease than were available to previous generations. I tell each patient newly diagnosed with Crohn’s disease, that regardless of the ups/downs or curves in their road to recovery, our goal is to find the best treatment that puts them back on a straight path toward achieving all their personal goals!
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: I was recently diagnosed with UC as a 30-year-old female. I had always assumed I would have children, but now I am worried about the risk children might face. What is the absolute risk that my children would develop IBD or another autoimmune disease? Of 100 children born to women who have UC, how many go on to develop an autoimmune disease?
A: While the cause of the inflammatory bowel diseases (IBD, ulcerative colitis and Crohn’s disease) is multifactorial, the current data suggests the absolute risk for UC is 1.6% with maternal UC and 2.7% with maternal Crohn’s disease. If both parents have IBD, then the overall risk is increased. It is important to discuss family planning with your gastroenterologist as there are some medications that may need to be stopped or changed prior to becoming pregnant.
While there is so much more to learn about the risks of developing IBD, we do know the three main components are (1) genetic, (2) environment exposures and intestinal microbiome and (3) an inappropriate immune response. For IBD to develop, it’s a combination of the perfect storm of all three components. It’s natural for parents/patients to ask what they can do to prevent IBD in their own children? The latest data would suggest that environmental triggers that increase the risk of IBD are (a) exposure (active or passive) to cigarette smoking (b) increased use of antibiotics, (c) increased use of nonsteroidal anti-inflammatory drugs (NSAIDS like ibuprofen) and (d) consuming a westernized, highly processed diet.
The current data also suggests that the key to optimal the best outcomes (child or adult) is recognizing (awareness) the symptoms of IBD, early diagnosis and timely treatment.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: My 18-year-old son was recently diagnosed with ulcerative colitis. He is 5’11” and is down to only 126 pounds. His body is not absorbing nutrients. They are going to put him on Humira and steroids. I have read the side effects of Humira and it scares me. What are his risks of taking Humira at his young age? He is also very depressed. What can I do to help him?
A: Although the diagnosis of ulcerative colitis or Crohn’s disease can be difficult for any patient at any age, it is important to recognize that depression and anxiety are extremely common when the diagnosis occurs during adolescence and young adulthood. At our center, we offer every child/young adult the opportunity to meet with our IBD-focused psychologist. We find that young patients really need an outlet to express their feelings as our behavioral specialists focus on teaching techniques to cope with the disease. Whether it’s use of guided imagery or deep breathing, coping is a learned behavior that young patients may not initially intuitively recognize or take the time to practice. It’s important to recognize when to ask for help with a psychologist or psychiatrist, even if your treatment center doesn’t have access to an IBD-focused psychologist.
Adalimumab (Humira) is a medication that binds to a protein in the body called TNF-alpha. The multiple studies in adults and children have shown that it not only heals the intestinal tract, but also improves growth by improving gut absorption of key nutrients and improving the overall quality of life for the patient. It is classified as an immune-suppressing medication. While the use of this medication can be associated with an increase risk of certain infections, this is uncommon. Prior to starting, your doctor will check for an active TB infection and may check for active intestinal infections or fungal infections. The additional risks such as an allergic reactions to the injection, rashes, liver injury, and certain cancers are also very low. It’s important to discuss the specific risk/benefits with your doctor so they can tailor the treatment to your needs.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
November 2020
Q: My 17-year-old son has now chipped and broke 3 bone areas. He is on Remicade and these areas have not healed after surgery. Does Crohns affect bone health and healing or is it the meds?
A: Crohn’s disease can certainly impair bone health as all patients are at an increased risk of nutrient deficiencies (Vitamin D, Vitamin B12, zinc, iron and folate). Moreover, some Crohn’s disease patients may restrict their diets (such as dairy-free, lactose-free) to control symptoms, and therefore, can further exacerbate the risk of poor bone health by limiting both Vitamin D and calcium.
For your 17 year-old son, it would be important to keep a 1-2 week diet history to further review with your gastroenterologist or registered dietician to better understand if his current diet is lacking specific nutrients. Given the history of poor bone health, he may require additional Vitamin D and calcium depending on this diet history. In my practice, we check Vitamin D every 6 months (supplement when needed) and check a bone density at the time of diagnosis and repeat if needed (such as following recurrent fractures or more severe disease). While clinical remission (no active gastrointestinal symptoms) is an important goal, we now recognize that complete gut healing is even more important in order to prevent further complications of Crohn’s disease. It is reasonable to review your laboratory markers with your doctor and ask if further testing is needed (endoscopy or abdominal imaging). In regards to the medication, we typically find that the infliximab (Remicade) improves intestinal absorption of key nutrients by healing the gut. As each patient requires personalized care for their IBD, I would recommend discussing potential medical side effects with your primary gastroenterologist as well.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
December 2019
Q: I'm 16 and was diagnosed with Crohn's last year. However, I experience severe constipation and have been hospitalized before because of it. Information I read says to eat vegetables when constipated but a lot of the veggies I can't eat because of narrowing. I am currently on methotrexate and I don't want to have to go on biologics. What foods will help with constipation? What other lifestyle and diet changes should be to help with this issue?
A: I am concerned that you may be constipated due to the narrowing that you describe. If your doctor does not think that you need different medications or a surgery for the narrowing then I can suggest some tricks for the constipation. Limited amounts of soft, cooked vegetables and vegetable soup, plenty of water (64 ounces or more) and using a laxative as directed by your doctor can all help. The best lifestyle change can be walking. I suggest discussing with your doctor whether you are at the point where methotrexate is the right choice for you or you might need surgery or escalating therapy. Trying biologicals too late does not help with reversal of disease.
ANSWERED BY:
Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
Clinical Professor- Pediatrics Gastroenterology
September 2019
Q: My 12-year-old son was diagnosed with UC/pancolitis in March 2018. He is trying different meds.He says he has constant stomach pain. Sometimes it is worse than other times, but it never fully goes away. A lot of the time he does not want to go to school because of fatigue and hurting but then he will cut up with friends and play xbox in his room. This disease is new to both of us and I am trying to understand what he is going through. How can I best support him?
A: I think the most difficult aspect of treating any patient (but especially children) with a new diagnosis of UC is allowing time for the patient to understand that UC is a chronic illness and that any treatment will take time to work. For a patient with a relative new diagnosis, this is the first time they haven’t felt better quickly after seeing a doctor. For most, patients see a doctor for a more mild ailment and it’s a quick fix with an antibiotic or a tincture of time. With UC, every treatment takes time to start working. For your son, I would suggest supporting him through the abdominal pain with comfort foods that don’t increase his GI symptoms and rest (reading, meditation, even video games) for his body to start to heal. I would also focus on the fact that despite his current symptoms, he will get better over time. Although the disease is life long, most patients return to their activities and “forget” they have UC.
I would also suggest that you look into your local Crohn’s and Colitis chapter and see if there are parent or peer mentors for the both of you. Sometimes, hearing what other parents had to go through and techniques they used can be very helpful. Some pediatric hospitals also have peer mentors that the children can get in touch with, whether electronically or in person.
Finally, I find it very helpful for patients who have been newly diagnosed to speak with a behavioral specialist (psychologist) as they can offer a variety of helpful coping skills for when the disease is active.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
September 2019
Q: My 13 old son was diagnosed w/mild case of Crohn's a year ago. Pentasa is not working for him and the Dr wants him to go on a biologic. Entyvio seems safest from what I have been reading. Can children be on Entyvio or should another biologic be tried first?
A: Great question! This is a really important question and one that does not have a straight-forward answer unfortunately. The short answer is, we just don’t know. The anti-TNF medications (infliximab and adalimumab) are the only FDA-approved biologics for pediatric patients with moderate-severe Crohn’s disease. Use of any other medication, like Entyvio, is considered off-label use. Entyvio is FDA-approved for adults with ulcerative colitis and Crohn’s disease. With that said, pediatric gastroenterologists have been asking the same question, “is there a certain group of children/adolescents that would benefit from Entyvio as their first biologic?” We don’t have the answer yet. There is some data to support that this could be a good option for some patients and I would encourage you to have this discussion with your primary GI physician.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
September 2019
Q: My 12 year old daughter was diagnosed with UC, with high grade dysplasia in her colon and low grade dysplasia in her small intestine. She started Prednisone and mesalamine 6 days ago. After consulting with other adult doctors, they have recommended she start Humira or Remicade. Both of these drugs seem pretty serious but is one preferred over the other. They want to scope her again in 3-5 months. Does dysplasia usually go away when the inflammation is reduced?
A: Only infliximab (Remicade) is FDA approved for pediatric UC. Adalimumab (Humira) is FDA approved for adults with UC, however, Humira is often used off-label for pediatric UC. Depending on the severity, Remicade is often preferred given its relative quick onset of action. If your daughter is admitted to the hospital, then Remicade is the preferred biologic. Both medications have a good safety record in children.
In regards to the dysplasia question. This is relatively uncommon in children, especially at diagnosis. I would agree with close surveillance. I would also suggest that the biopsies be reviewed by a either a pediatric or adult pathologist who is an expert in intestinal dysplasia to confirm the diagnosis.
ANSWERED BY:
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
June 2017
Q: I'm 15 and in high school. I wanted to know if I can get some advice on how to handle my Crohn’s symptoms in school. How to deal with embarrassing situations of needing to go to the bathroom in school and in public.
A: Proper preparation can help with the stress or anxiety of a potentially embarrassing situation. Make sure you have an “emergency kit” in your locker or school office. Tell a trusted friend or teacher where you keep it, in case you need someone to bring it to you in the bathroom. Common items for the kit include: wet wipes, underwear, pants or leggings, large size freezer bag to transport soiled clothes, hand sanitizer and perhaps some Poo-Pourri or air freshener. It is important to remember, you may NEVER need these items, but it can feel reassuring to know they are available.
In terms of frequent or urgent bathroom use, speak to your teachers about your IBD and let them know you may need to leave the classroom without permission or a pass. If they know ahead of time, this can take away the focus of your bathroom use and normalize the experience. It is important to de-stigmatize your IBD and therefore, talking with friends and teachers can help them to understand your needs and provide you with support when needed. There are also options for accommodations through the 504 Plan that you, your medical provider, teachers, parents can develop if your IBD and treatments are affecting your school performance or experience. For example, you may be able to “stop the clock” during exams if you needed to use the bathroom. There can even be ways to keep an emergency kit in or very close to the school bathroom you use.
It's important to remember that stress doesn’t help anything. Therefore, if you are feeling embarrassed, reach out for support. Often times we experience more anxiety related to the possibility of a situation happening, and forget that whatever you are faced with…you will be able to cope. Having a good support network can make coping much easier. For additional information about being a teenager with IBD, check out: http://www.crohnscolitisfoundation.org/assets/pdfs/teenguide.pdf
ANSWERED BY:
Megan Riehl, PsyD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2016
Q: My daughter is 16 and has CD. Her doctor has recommended Remicade. He also indicated that they can now “push the dosing”. He said the infusion can done in a shorter period of time than two hours. I can’t find any information on Remicade infusion being completed in less than two hours. Do you have information on faster infusion times?
A: There are scientific studies showing safety and tolerability of rapid infusions of Remicade. I am not aware of any patient-focused literature discussing this topic. I would recommend bringing your questions to your daughter's physician to discuss further with him or her. This is not yet typically standard of care at most hospitals, but is being offered at more and more infusion clinics.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
June 2014
Q: My son was diagnosed in 2013 (at age 5) with ulcerative colitis. He had his colon removed in June 2013 and has an ileostomy bag. Dr.'s would like to do the j-pouch surgery on him, but I am very skeptical. How would I find parents of children my son's age that have ileostomy bags and going through similar situations? I see parents of much older children, but not younger ones. I am a single mother trying to deal with this all alone and I feel lost and overwhelmed.
A: While the decision to have j-pouch surgery is ultimately left for the gastroenterology and surgical experts, the CCFA is a wonderful resource to connect with other patients/parents with similar experiences. Speaking with the treating surgeon and IBD gastroenterologist may also provide patients/parents to exchange experiential stories. While IBD is a challenging disease at any age, younger children can often adapt quite well even to surgery, especially when the adults around them are able to make them feel comfortable about themselves. This positive adaptation is likely a result of a still formative self-identity in early years of life which is especially responsive to environmental influences, especially parental reactions. If the child does seem frightened, angry or depressed about having IBD or surgery, a few sessions with a behavioral specialist can be helpful to help teach coping skills often using play therapy techniques.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
December 2012
Q: Should recurring C Diff in a child be a cause for concern? Say recurring 3 times in 2 months and after taking antibiotics?
A: Clostridium difficile is a bacteria that can cause inflammation and diarrhea in pediatric or adult patients without or with inflammatory bowel disease. Although proper studies are still lacking, some evidence suggests that people with inflammatory bowel disease are at greater risk for infection with Clostridium difficile than those without disease.
The initial treatment of Clostridium difficile in children can fail more than one-half of the time, regardless of the treatment. This failure might occur because the bacteria is resistant to standard therapy or the patient is a carrier of the bacteria. Carriers can be asymptomatic for months without treatment of the bacteria, but it is unclear whether they will remain so if immunomodulator or biologic agent therapy is initiated for the inflammatory bowel disease.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: My daughter has Crohn's disease and she won't have a bowel movement for a couple of days and then when she does it is very painful and hard to get out. The stool is soft in consistency and is sometimes flat. We have tried laxatives and stool softeners but they just seem to make her go more often, but still painful and difficult to get out. She had normal bms after an increased dose of infliximab, but that only lasted 2 1/2 weeks (tests show no antibodies to the biologic). What can we try?
A: Crohn’s disease can affect any portion of the intestine from the roof of the mouth to the skin around the bottom, which is also known as the anus. Difficult or painful bowel motions can be caused by disease-related disorders such as narrowing, fissures, or ulcers of the anus. Infliximab can be beneficial in treating some patients with disease of this area. Any patient with these symptoms should generally be thoroughly examined and this examination must frequently occur in the operating room because it is too uncomfortable to perform in another setting. Further treatment would be based upon the findings of this examination.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
Treatment
February 2023
Q: I was diagnosed with UC a few months ago. I was put on Uceris then Stelara. I have been in remission since I started the Uceris and am tapering off. I have also been recently diagnosed with inappropriate sinus tachycardia (fast resting heart rate), which seemed to start with the UC symptoms. The cardiologist is not worried about it, but cannot explain why it is happening. I have seen that UC can cause a fast heart rate. Is this true? Should it get better if the UC gets better?
A: Sinus tachycardia can occur due to several different causes and typically is considered a response to some underlying process. These can include infections, dehydration, anemia, low blood oxygen saturation, heart disease, lung disease, pain, anxiety ingestion of stimulants, to name a few. Several of these etiologies can occur in the setting of UC, so it is important to work with your doctor to investigate and possibly address these, before a diagnosis of inappropriate sinus tachycardia is made, which is an unusual condition.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
July 2022
Q: After being diagnosed with Ulcerative Colitis in Oct 2021, My gastroenterologist put me on Uceris (Corticosteroid) and Lialda. I felt good with no active symptoms for 3 months. I started weaning off Uceris after that and quickly saw my symptoms come back (mainly diarrhea and blood in stool). After starting and weaning off Uceric again, my doctor wants to put me on Imuran or biologics(Humira) since I cannot achieve remission consistently. Do you have a recommendation for first time use?
A: I agree with advancing treatment to biologics or immunomodulators if there are active symptoms despite mesalamine, but I encourage you to a. Verify objective active inflammation with stool calprotectin and/or flexible sigmoidoscopy. b. Have a comprehensive discussion of ALL your medication options (what you listed are only a couple of options - besides azathioprine/adalimumab examples of other options are infliximab, vedolizumab, and ustekinumab). c. come to a shared - decision with your doctor about the best treatment for your UC.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
July 2022
Q: I have been taking Humira for a year and a half. Since starting the drug, I have had scalp psoriasis. Now, after a year and a half I'm starting to develop the same reaction. I have hives that come and go in different areas as well as some skin inflammation and after my last injection my lips ballooned until I took some Benadryl. My question is, is it possible to have an allergic to a drug like Humira after taking it for so long?
A: Yes , this is entirely possible and skin reactions can occur at any time after starting a medication. Humira can cause certain kinds of psoriasis, hives, and lip swelling in some cases. In your situation, I recommend consulting with a dermatologist, possibly an allergist, as well as your GI to determine the best course of action moving forward.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
June 2022
Q: Hello, I'm 58 years old and was diagnosed with Crohn's a year ago. I've been receiving infusions of Inflectra every 8 weeks which may be helping because my calprotectin is back to normal. I will know more when I have the next capsule endoscopy. Meanwhile, I am wondering if it is normal to be very tired after the infusions. I am sleeping for hours and don't feel like I can do anything for a couple of days.
A: I agree with your work up to make certain first that the disease is in complete remission and it’s not active disease and inflammation causing your symptoms. Another suggestion could be to determine if you are getting any pre-medications with your infusions such as Benadryl which can cause fatigue and discussing with your providers if there is a -non-drowsy option you could use for premedication instead. Lastly, I would check to see if your vitamin levels have been checked especially your vitamin B12 levels. This is absorbed in the ileum which it seems may be the area of your Crohn’s disease and can commonly be low in Crohn’s patients. Low B12 is associated with fatigue and repletion of this can help energy levels. Additionally, making sure iron levels and vitamin D are replete are also critical. Crohn’s disease has been associated with a chronic fatigue even when in remission that can affect certain people. There is ongoing research in this field to better understand the causes and therefore formulate better therapies to treat it. This is a diagnosis of exclusion and would explore other diagnoses first including checking in with your primary care doctor to make sure other organ systems are checked such as thyroid. One method that helps patients is to increase exercise to 5 times a week for at least 30 minutes. This tends to increase energy.
ANSWERED BY:
Alyssa Parian, MD
Co-Clinical Director of Gastroenterology & Hepatology at Johns Hopkins School of Medicine
Co-Clinical Director of Gastroenterology & Hepatology at Johns Hopkins School of Medicine
June 2022
Q: I recently was diagnosed with ulcerative proctitis, a more mild form of ulcerative colitis. I went to see my doctor after having consistent blood in my stool but no other symptoms. I had a colonoscopy done back in September 2021 and was diagnosed with ulcerative proctitis. I was prescribed 1000mg mesalamine suppositories. I have been searching for alternative, natural treatments for my condition as I would prefer to not be on medication. Is it possible to treat my condition without medication?
A: Treatment decisions still are made on a personalized basis. Some of my proctitis patients can go on as-needed therapy, but if you are having consistent blood in the stool, no one wants that for you, and generally speaking, the risks of undertreated inflammation is much higher than any drug that you may take. However, I would recommend speaking to your physician.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
February 2022
Q: Hello. I am diagnosed with UC. I have been in an active flare for over year. My doctor wants to put me on a biological since I can not get in remission. He left the choice up to me. Do you have a recommendation for first time use?I have narrowed it down to Humira or Entyvio.
A: This really is more of a personalized decision, and depends not only on your colitis, but perhaps other problems you may have related to your colitis (ex. Arthritis or other conditions outside of the bowels). Both, however, are reasonable choices, and both are better than being on steroids long term or being in a flare all year.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
February 2022
Q: I have been on Humira for years, I have had the shots and booster for Covid. I haven't had problems till I came down with Covid before Christmas. I had 3 rounds of antibiotics and 3 rounds of steroids, monoclonal antibody treatment. Covid seems to be gone but has settled in my lungs, throat sinus, headaches. Now on another round of antibiotic and inhaler and cough meds. I postponed my Humira injections, worried to go back on because of this, advice please.
A: I’m sorry to hear that. Certainly you should talk to your lung doctor about the safety of your biologics in the setting of COVID. However, generally speaking, we do not think that your risk of getting sicker with COVID is not increased on humira.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
February 2022
Q: My son was diagnosed 10 mo ago w/ Crohn's - pretty severe inflammation but all in the bottom third of his colon. No strictures. Stelara was unsuccessful. Also tried Prednisone as well as Budesonide on top. He's trying Entyvio next. We want to avoid immunomodulators since there's lymphoma in the family, and we're even concerned about anti-TNFs. The statistics for biologics in terms of how often they are successful look bleak. I'm wondering how often it is that no successful treatment is found.
A: Keep in mind that statistics from clinical trials often set a high bar for success, so while the numbers may look bad, most biologics do help with at least an improvement in the inflammation. I think that entyvio sounds like a reasonable choice, but there are other options, including anti-TNFs. Not knowing his entire situation, lymphomas are not often genetic, so the family history, as well as the low likelihood of lymphoma would not sway my decisions. Remember that the risks for unchecked inflammation and chronic steroids in his Crohn’s is almost always higher. I would recommend further conversations with his doctor.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
December 2021
Q: I am 53 yr old male with Crohn’s disease over 20 years ago. Had remicade 8 years ago, surgery to resection intestines over 20 years ago. started Inflectra. Been going to ER every two weeks now for past 2months. Having very bad stomach pains and can’t use the toilet after eating.. this just started happening two months ago! food is just sitting in my stomach and won’t move. When I get to ER they give me steroid and pain meds, in a couple hours I’m like new man! What could be wrong?
A: I am sorry that you have had to visit emergency room so often. I would suggest discussing with your GI doctor and getting a full re-evaluation with him/her. It seems that you improve with steroids which goes in favor of Crohn’s rather than constipation.
ANSWERED BY:
Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
Clinical Professor- Pediatrics Gastroenterology
December 2021
Q: My 17yo daughter was diagnosed with Crohn's 11 months ago. Currently being treated with Humira (since July). The last 3 1/2 months she has had several bouts with throat swollen glands. They are visibly swollen on the outside and painful to touch and painful inside. ENT thinks it is related to Crohns.GI specialist said he never heard of that. Overtime, the antibiotics do "work" but then 2 to 3 weeks later the swollen glands return.
A: I am sorry to hear that your daughter is having problems with swollen glands. Is her Crohn’s is under control? I have seen some children develop swollen glands on Humira and some of the considerations are: check Humira levels and if it is too high, consider titrating the dose. Discuss with your doctor if she should be seen by ENT and whether she needs an immunology evaluation.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
December 2021
Q: My granddaughter was diagnosed with crohns 3 years ago. She had to have a small section of her intestines removed. She has been on remicade and was doing good until her body was being covered with red blisters. Her head has such terrible psoriasis she has patches of bald spots and now has these lumps filled with pus. They switched her to Stelara and says this will clear up. How long will it take she is 16 and not happy.
A: I am sorry that your granddaughter has to go through this problem. We all realize that body image is very important at this age. Please reassure her that her psoriasis is very likely to resolve completely. It may take 4-6 months. I also recommend discussing with your doctor about seeing a dermatologist.
ANSWERED BY:
Alka Goyal, MD
Clinical Professor- Pediatrics Gastroenterology
Clinical Professor- Pediatrics Gastroenterology
December 2021
Q: I am a 62 year old female diagnosed in Nov 2019 with Crohn's disease. Initial treatments included prednisone, Pentasa and then Remicade infusions in May 2020. Had a bowel resection in October 2020. In July 2021 had a reaction during Remicade infusion so my doctor started me on Stelara in August 2021. November labs have the highest Calprotectin level ever, and CT scan shows new strictures developing. How long does it take for Stelara to have an effect? Or is this a reaction to Stelara?
A: I am sorry to hear that you aren’t feeling well. Sounds like Remicade was working fairly well for you however it was complicated by an infusion reaction (which we know can happen but is rare). If you are having progression of your disease on the Stelara it might be that it is too soon in the treatment course or you are under medicated, what that means is that you might benefit from escalation of therapy, but this would need to be discussed with your treating provider. They could see if they can get approval for every 4 week dosing or repeat IV loading dose, and if no improvement within the next 2-3 months then consider going back to anti-TNF therapy class with Humira and strongly consider combination therapy with immunomodulator (azathioprine or methotrexate). If you are having significant symptoms now or they are concerned about severity of inflammation they can trial short course of steroid (budesonide vs. prednisone).
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
November 2021
Q: Hi, I am a 28 year old Crohn's patient dealing with ongoing fistulizing perianal complications over the years. I have tried just about every biological drug out there (besides cimzia). But the fistulas have never cleared up and just branch further more. This was initially caused by having a resection after having an ostomy for 7 years, and the answer was to put the ostomy back to divert path of stool away from the fistula tracts. However, 7 years have gone by and there's still constant drainage.
A: This is a tough situation that requires close multidisciplinary care with your colorectal surgeon and gastroenterologist. The first step is to assess the degree of activity of the perianal fistulas as well as the intestinal disease (ie how much Crohn’s disease activity is going on in the small bowel and colon). This would involve getting an MRI pelvis to really examine the perianal area for fistula activity and abscess (sometimes with an MR enterography to look at the small bowel for activity) and a colonoscopy. If there is still quite a bit of activity despite diverting the stool, then the reality is that you may need to have a completion colectomy with permanent ileostomy especially if you have been on so many medications without benefit. If you haven’t been referred to a major IBD center for a consultation with an IBD specialist and IBD colorectal surgeon, we would strongly recommend it as this is a complex case. It is important to advocate for additional opinions – if there is consensus across the board, then that is helpful for decision making, but sometimes a fresh set of eyes can evaluate the situation and potentially identify another option. However, in truth, a surgery does seem like it may be the safest, most effective approach – remember, surgery is not a failure, it is an important treatment to help regain quality of life, control inflammation, and decrease risks of treatments that are not working.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
November 2021
Q: I'm on mesalamine for crohn's. I've had polyps removed in the past. I battled uveitis the past year and my last colonoscopy showed 2 deep ulcers. One in the colon and a smaller one in the small intestine. I did not take the medication faithfully since I don't experience much pain. Would staying on mesalamine faithfully or at a higher dose help heal the ulcers? Would a bland diet help in the healing?
A: Mesalamines for Crohn’s have limited utility. The deep ulcers usually reach below the mucosa (the inner layer of the colon) but the mesalamines are solely mucosal agents. In my opinion, Crohn’s patients need biologics for optimal management. This is more important than a bland diet. I would stop the mesalamine and try a biologic to prevent uveitis recurrence and ideally heal the ulcers as well.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
August 2021
Q: I am scheduled to have a laparoscopic small bowel resection to treat a fibrotic stricture. I've been dealing with constipation, bloating, sometimes severe abdominal cramping. I'm curious, assuming the surgery goes well, how much better should I expect to feel once I recover?
A: If your stricture is the cause to your symptoms then after the recovery period you should have improvement in those symptoms. Depending how much small bowel they have to resect and whether it involves the ileocecal valve and they have to resect that as well. Some people after resection will have increasing stool frequency (diarrhea) which is thought to be due to bile acid malabsorption and can be treated with bile acid sequestrant therapy.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2021
Q: I was diagnosed with mild to severe Crohns in the small bowel in 2004. I have been on Humira since 2005 but lately it seems like it isn't controlling the symptoms like it was at first. Often I am having symptoms the day after injecting the Humira. Is is possible that a medication stopped working, requiring a change in meds?
A: Yes, this is entirely possible. There are experts who think the average lifespan of a biologic in most patients is 2-3 years, so this is already very long on Humira. Your doctor should check your Humira level and esp your antibodies to Humira, as it is possible that you developed these while taking this medication. If this is the case, we can occ increase the Humira dose but more often we end up switching the drug altogether. The good news is that there are more options since 2004 and the injections are by and large less frequent.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
August 2021
Q: I have been on biologics for over 20 years, mostly Remicade. I have suffered from allergies (environmental) my whole life. Today I just had allergy tests and tested negative for everything. This is the 2nd time this has happened in the past 20 years, even though I know I have allergies. Could this be a side effect of a biologic? I suffer from chronic sinus issues and infections, which are very common with biologics.
A: Treatment with Remicade isn’t associated with increase in allergies, or at least hasn’t been reported. I would work closely with allergist regarding what could be causing your allergy symptoms (allergic rhinitis is a common cause). However chronic sinusitis should be evaluated with ENT and consider imaging as this could be due to sinus polyps/sinus obstruction and can be treated. Anti-TNF therapies have been associated with rare risk for chronic sinusitis. We have to weigh the risks and benefits of therapy, sometimes if patients have elevated Remicade levels we can reduce the dosing/frequency and improve some of these rare complications of therapy.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
June 2021
Q: I am getting ready to have another colonoscopy. I know that the split prep is typical. However, I am not willing to wake up in the middle of the night. I have two young children and the idea of being up more than I need to in the middle of the night is enough to make me cancel my colonoscopy (since I have no way to catch up on rest). I know that there are alternate schedules since I have done them in the past. What are some prep schedules that would not require me to be up at night?
A: Studies have shown that the split prep is more effective and providers a cleaner colon. The challenge is that almost any prep will have you waking up at night due to starting at 5pm and the colon getting moving early evening and likely throughout the evening. I think if you have concerns about your prep and timing, work with your ordering provider to see if you can arrange alternative schedule. Ie last colonoscopy of the day and doing alternative prep that still work meet requirements for NPO status.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
June 2021
Q: To get a UC flare under control, my doctor prescribed me prednisone, in a stronger and longer dosage than I've taken before. I was on 40 mg for 3 weeks, and through the tapering process am now at 30 mg. Two weeks ago at the 35 dose level, I started feeling funky -- very foggy and lightheaded, like I could not focus on anything. I still am experiencing this, with a bit of head pressure. Is this normal and due to the steroids? Is there anything I can do to mitigate these side effects?
A: Prednisone/steroids can make some people feel different/off. However if you are having any specific localizing symptoms like a headache or pressure I would recommend evaluation with a medical provider to do an examination and exclude other causes to your symptoms. It is challenging as there is really no way to mitigate the effects of steroids other than decreasing the dose or not taking them. Another consideration could be using a more gut selective steroid like budesonide-MMX (Uceris) or budesonide (Entocort)
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
June 2021
Q: I have had Crohn’s disease since 1993 and a few years ago after my second bowel resection, my GI doctor started me on Entyvio infusions and I have achieved remission which I am so grateful. My issue is with my frequent and urgent diarrhea/watery bowels and my work place. Imodium, diet changes and specialized medication have been used without success. The most successful treatment was a two week antibiotic Rx but nothing since then. I am miserable at work and in need of advice.
A: Congrats on achieving remission! I assume when you say remission they have either done stool testing, imaging with CT or MRI or a colonoscopy/endoscopy. If that is the case and you do not have any active inflammation then I suspect that your diarrhea might be due to a condition called bile acid malabsorption. Bile acids (made in the liver and stored in the gallbladder) are released when you eat and are typically reabsorbed in the terminal ileum (where I suspect you have had surgery several times). If you are missing your terminal ileum or a portion of it you get bile acid malabsorption which leads to diarrhea, bloating and cramping. We have medications called bile acid binders that can improve these symptoms dramatically, you should discuss this with your primary GI provider. Another possible cause of diarrhea that can respond to antibiotics would be small intestinal bacterial overgrowth and that typically responds well to antibiotics.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
May 2021
Q: I am a 52-year-old male who has been suffering from IBD for more than two years. I have been taking mesalamine since then and also have been taking steroid (prednisone) almost fifty percent of the time to control flareup. Recently I came across some research papers that showed direct link between Vitamin D3 and IBD. My current vitamin D level is borderline at 30 nmol/L. Do you think increasing the level to 75 by taking high dosage of vitamin D3 would help to curb the auto immune disease?
A: While there is some data that Vitamin D3 may be associated with IBD, there is not yet strong data that increasing your vitamin D to high level you have mentioned will be beneficial.
The goal of IBD treatment is to be in a stable, steroid free remission. If you are requiring steroids 50% of the time, this is a sign that the medication you are taking is not working, and either the dose may need to be adjusted, or a new medication is needed. Steroids are the medications associated with the most risks and side effects in IBD treatment, and should be avoided as much as possible.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
May 2021
Q: What antibiotics are best for IBD patients for conditions like sinus infections. Are there particular antibiotics that should be avoided by IBD patients? Should probiotics be taken when you are on an antibiotic?
A: Antibiotics can cause diarrhea by disrupting the normal bacterial community in the intestine. One of the most common ways that antibiotics can cause diarrhea is through increasing susceptibility to C difficile infection. The classes of antibiotics that have the highest association with C diff infection risk are fluroquinolones, Clindamycin, Penicillins, Cephalosporins, and Carbapenems.
There is low quality evidence for probiotics. There may be some benefit to taking probiotics such as Saccharyces boulardii, the combination of L acidophilus and L casei, the combination of L acidophilus, L delbrueckii bulgaricus, and B bifidum, or the combination of L acidophilus, L delbrueckii bulgaricus, B bifidum, and S salivarius thermophilus.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
May 2021
Q: I'm 30 and I was diagnosed with Crohn's disease last year. I've been suffering new symptoms between infusions. Is it normal for the arthritis associated with Crohn's to be so excruciating? I have trouble gripping a doorknob at times. Also, is nerve hypersensitivity also associated with Crohn's? I just need to know what issues to take to my gastroenterologist and what to discuss with other providers.
A: Unfortunately, arthritis is associated with Crohn’s disease and ulcerative colitis, and can be quite painful. New arthritis symptoms should definitely be discussed with your provider so that she or he can determine whether the symptoms are due to ongoing bowel inflammation, medication side effects, or potentially simply share the same underlying genetic risk as IBD. Some IBD medications are better than others at treating arthritis, and medication adjustments may be needed, or medications may need to be added in order to get the arthritis under control.
New nerve symptoms should also be discussed with your IBD provider. Nerve symptoms may be related to vitamin deficiencies that can occur with IBD, or possible medication side effects. It is also best to bring up any new symptoms so that your provider can you let you know if he or she thinks that they may be related to your underlying condition or treatment or not.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
May 2021
Q: I am 36 and was recently diagnosed with UC. I take medication for chronic pain syndrome, will this affect my UC ? If so, should I discuss with my gastroenterologist when I get my new medication for UC? And how should I go about this discussion?
A: Discussing any medications that you are taking, whether prescribed, over the counter, or supplements is important in order to make sure there are no interactions with your other medications and that the medications that you are on do not affect your IBD symptoms.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
April 2021
Q: I have been on Remicade/Inflectra for 19 years. I receive infusions every 8 weeks along with blood draws as necessary. Because of so many years of this (and maybe because of my age - 64), my veins can be difficult to access. I only have 2 that the clinic seems to be able to use. I am considering a port. My GI is okay with it but I am still on the fence. What are the pros and cons of a port?
A: Pros of a port would be easy access for your infusion nurses, less pain as well less anxiety for you every time you have to think of getting a medication that has kept you well for 19 years. You would also be able to get your labs drawn through the port. Some patients also like having both arms free during treatment. It also would help preserve the veins you do have. Cons would include the risk of infection, which could be severe. This is my greatest concern for patients. Ports also do need upkeep and patients who are vigilant about monitoring for infection or complications: they can malfunction and are susceptible to blood clots and may require replacement. Some patients still get soreness around the site after treatments, not all nurses can access ports, and the port is visible and juts out of the skin, and can be bumped
when patients are particularly active. This is a personal decision to be made with joint decision making with your physician. In the meantime, make sure you are particularly well hydrated before you arrive for your infusions, not just the morning of but the whole day before. Identify nurses who have been successful in accessing your veins in the past.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I was diagnosed with a mild case of Crohns 6 months ago. My doctor tells me that biologics are the only treatment to achieve long-term remission. I'm very concerned about having Stelara in my body for the rest of my life. I'm told that this is the treatment for me. Are there are any other non-biologic drugs that could help me achieve remission, or if dietary changes can achieve the same effect.
A: The details of your case are best known by your primary gastroenterologist. There are various types of medications for Crohn’s. Biologics, for patients who have mild to moderate disease and depending on their risk for progression, in terms of getting patients into remission and keeping them there have the strongest data and best safety records compared to other available non-biologic medications. What I tell all my patients is that you will be on Stelara “Forever For Today” – what I mean by that is that if the medication works we would keep you on it for as long as it works. If the medication does not work or stops working, we do not keep you on it forever. If a new treatment arrives which would be better suited to you, you would be switch you. In short, from the information we have at this time we would hope and wish that we can keep you on this medication that is very effective with a great safety record. The concern about having a medication for a lifetime is understandable. However, at this time there is no cure for Crohn’s and we know that the majority of patients need to be on lifelong medication. There is a dysregulation in your immune system pertaining to your gut, and unfortunately we need to use medications to help regulate that for you. While some dietary interventions have helped patients (less process food diets, Mediterranean type diets), we do not yet have evidence that diet alone can control infection in the long term.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I have been on Entyvio for a year now and have experienced total remission from my ulcerative colitis symptoms. However, since starting the medication I have had nonstop bloating. I have tried countless treatments, including medication, low fodmap diet, meditation, ibguard, antibiotics, etc. Nothing has stopped the bloating. Considering that the bloating started around the time I started my infusions, could this be a side effect of the Entyvio?
A: Bloating is not a recognized side effect of Entyvio, though every patient is different and every patient’s response to a medication may be unique. It sounds as if you have explored several causes of bloating other than the medication and not found relief. There may be many causes of bloating, including IBS to which patients with IBD are at risk. Celiac disease, lactose
intolerance, small bowel bacterial overgrowth and medications are all possible causes. Is it possible that you changed your dietary habits since feeling better from ulcerative colitis standpoint? Has your small bowel been evaluated? Hormonal changes can also impact bloating. If not causes are found, biofeedback can be considered and has been shown to decrease distension.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
April 2021
Q: I am currently on a biologic (infliximab)regimen for UC. I have the second COVID vaccine
shot coming up soon. Two days after the vaccine, I am scheduled for my biologic
infusion. Is this safe? Will the vaccine so closely administered adversely affect the
effectiveness of either? Should I postpone my infusion?
A: These are all good questions. There are no consensus recommendations on spacing our
the COVID vaccine with infusions. I advise my patients to leave at least 3 days between
the vaccine and an infusion to better decipher if one or the other is causing new
symptoms. Three days is generally enough time for any symptoms from the vaccine to
resolve.
There is nothing to indicate that postponing the infliximab infusion will be helpful for
the vaccine. In fact, it may put you at risk for a flare of your UC. We do not yet know if
medications like infliximab blunt the effects of the vaccine but this is an active area of
study. I advise my patients to get the vaccine and continue their therapies as scheduled
until more information is available
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2021
Q: I have recently been diagnosed with small bowel Cohn's. A second colonoscopy (after CT) revealed chronic active ileitis. There is inflammation also narrowing of the small intestine at that area. The Dr recommends Humira but after reading results of others, I am afraid of it. I am considering Entyvio over Humira because I read that it has a higher safety profile. How do I decide on medication?
A: The decision on the “right medication” is a very common scenario. The best therapy for a specific person with Crohn’s disease is going to be based on several different factors. Therefore, it may be different for you versus someone else with Crohn’s disease. I would discuss the risks and benefits of each of the therapies being considered with your gastroenterologist and together, determine the best option for you.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2021
Q: I get Remicade infusions every 8 weeks for Crohn's. I will soon be eligible to get a COVID 19 vaccination. I need to know whether it is necessary to time the shot around my Remicade. I previously thought vaccinations had to be at least 2 weeks before or after Remicade, but I recently read that this is not necessary. I am anxious to get the vaccine and am hoping for as little delay as possible.
A: I have been telling my patients to take the COVID vaccine whenever they can get it, irrespective of where they are in the infusion cycle. This is because there is no data on taking the vaccine on immunosuppression and the vaccine availability is limited.
My theory on this is that there is at all times a minimum of Remicade in your body, which slightly decreases your body’s ability to develop antibodies to COVID. However, there is no data that more Remicade inhibits the antibody rate more.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: I was diagnosed with mild to moderate Ulcerative Colitis a year and 6 months ago. I have been taking 1200 mg of mesalamine with good results but lately I had been having more frequent bowl movements and with what felt like stomach spasms. I went to my GI who ordered bloodwork along with stool and urine tests and the results were all normal. He prescribed digestive enzymes to take with along with the other med and the stomach spasms have stopped. Are these in common use with UC?
A: Nope, digestive enzymes (I assume you mean pancreatic enzymes?) are not common. You are likely underdosed on the mesalamine, the maintenance dose is more than 2,000 mg mesalamine a day and the flare dose is more than 4,000 mg a day.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
February 2021
Q: Six months ago I had Covid-19 and now have the antibodies. My UC is in remission and I take mesalamine for it. I was previously on 6mp until I contracted Covid and then stopped. Is it now safe for me to get the COVID vaccine or should I wait until more information is available about the effects on individuals with auto-immune disease or until I no longer have antibodies?
A: It is safe to get the vaccine. I am telling even people on dual immunosuppression to take it. You are basically on no immune medication, so you are like the general population that the vaccine trials were done on, except for your IBD which is in remission. We don’t know how long the infection antibodies will last, so doctors in the hospital who had COVID are still taking the vaccine, because we believe it’ll protect them from a bad infection.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2021
Q: I was diagnosed with Microscopic Lymphocytic Colitis in April 2018. It is like Budesonide works well if I stay on it. My GI doctor's keep moving me on and off different treatments and none of them seem to work. Is MLC an IBD? Is MLC an autoimmune disease? Is there a standard treatment for MLC and where can I get more information on this condition?
A: Budesonide is a very effective treatment for microscopic colitis. Microscopic colitis has 2 subtypes, collagenous and lymphocytic colitis. Yes, this is a type of inflammatory bowel disease but generally has a good prognosis in that it does not increase colon cancer risk like ulcerative colitis can. The cause of microscopic colitis is unknown, but the immune system is definitely involved ast is is an inflammatory condition. Some microscopic colitis can be triggered by certain medications (like NSAIDS, acid suppressants, antidepressants), so I recommend a thorough review of your medication list with your GI physician. Budesonide is the most effective treatment for microscopic colitis, even though it can also be treated with cholestyramine and bismuth. If there is no response to budesonide, other conditions/problems should be considered and a work-up for other causes such as food intolerances and celiac disease initiated. For certain refractory cases of microscopic colitis, the use of medications normally used for Crohn’s and ulcerative colitis like biologic therapies and immunomodulators may be needed. Some resources for reading: https://gastro.org/guidelines/liver-diseases/the-medical-management-of-microscopic-colitis/
https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/diagnosis-treatment/drc-20351483
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I am a 57-year-old female diagnosed with Crohn's November 2014. I take Humira weekly injections. I suffer from anal bleeding and horrific burning in my belly, four out of five days a week. Can these symptoms be side effects of the disease, the medication or something else? Is there something that can be done to eliminate these side effects?
A: Rectal bleeding and burning in the abdomen are not side effects of the medication humira itself, however, they could be a flare of Crohn’s disease itself or a complication of Crohn’s (such as a stricture, partial bowel obstruction, abscess). The symptoms need to be evaluated with endoscopy/colonoscopy or imaging studies. They could mean that the humira is not working well for your Crohn’s or that your medication or treatment needs to be adjusted.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I’m currently on stelara every 8 weeks which is working well for me, however I am also 19 weeks pregnant. My next injection will be when I’m 22 weeks which is fine, but the following will be when I’m 30 weeks and in the third trimester, is it still safe to take this injection at 30 weeks and then stop treatment? I may be induced at 39 weeks so would one at 38 weeks would be out of the question?
A: Keeping the inflammatory bowel disease under control is the most important goal in pregnancy. It is safe to take the injection at 30 weeks, but waiting one week to take the 38-week dose seems reasonable given that it’s possibly very close to your delivery induction date. I would recommend taking that dose immediately after delivery. That said, if your IBD is active, or you tend to flare easily, the dose does not have to be held or changed. As always, involving your GI and OB physicians is key as they are familiar with the details /severity of your IBD.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I have recently been diagnosed with Crohn's and have started Humira. I know that it will take several weeks to see any changes. In the meantime, I have had a flare-up with symptoms lasting more than 7 days. I don't have a lot of diarrhea; however, I do get a lot of burning and 'gurgling' (sounds like a coffee pot percolating) in my stomach. I take Pepcid, which makes the burning feel better. Is it okay to take an antacid with Humira? What is the gurgling?
A: Yes, it is okay to take antacids with humira. Gurgling is a very nonspecific symptom of feeling food or gas go through your GI tract It can be associated with inflammation, narrowing of the intestine, food intolerances like lactose intolerance, bacterial overgrowth or gut sensitivity
Please contact your gastroenterology physician becasue as a new humira patient, you may need to take a short course of a steroid (like prednisone or budesonide) if the symptoms are bothersome while the humira takes effect.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
January 2021
Q: I am a 39-year old male and was diagnosed 6 years ago with left sided ulcerative colitis. The affected area remains at the last 25 cm of the colon. I take mesalamine and rowasa enemas. I find myself with mild flares every 6 - 12 months. I use Uceris to control the flares. While the flares are mild, I cannot retain long remissions. Can I do anything else to help with
treatment? Moving up to the Immune Modifiers and Biologics seem to be an overkill and not sure if it is worth the risks.
A: I recommend discussing moving to a biologic therapy, perhaps considering vedolizumab which has a safer side effect/lower risk profile to prevent flares. I also recommend asking your gastroenterologist if your colon is healed on just mesalamine by mouth and the enemas. If there is still active inflammation on colonoscopy between flares it is prudent to add a biologic to achieve the goal of mucosal healing. Achieving healing of the colon can prevent further flares and minimize the risk of development of precancerous changes in the future.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2020
Q: I have Crohns and had a permanent ileostomy 10 years ago. I have been having great health with minimal issues. But lately I feel like I have flares, fatigue, stomach aches, eye inflammatory issues, more frequently. Since I have an ostomy it is not the usual bloody diarrhea flares. I am not taking any medication since my surgery. Should I be taking medication?
A: If you are not feeling well and have fatigue and stomach aches, it is important to contact your health care provider and make sure the symptoms are evaluated. Your doctor will determine whether you need blood work, imaging like a CT scan or MRI, or scopes like an upper endoscopy to look into the esophagus, stomach, and first part of the small intestine (duodenum) or ileoscopy (scope through the ileostomy) to check whether there is any inflammation that may need Crohn’s medication or to find any other cause for symptoms. Even if Crohn’s is not the cause of your symptoms, it is important to get them evaluated and find a way to manage them so that you can have the best possible quality of life.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2020
Q: I was just diagnosed with mild Crohn’s in my small intestines. I do not have the usual symptom of diarrhea but had eye inflammation a few times this year. My doctor wants to start Humira and Imuran. I am very worried about the side effects especially since these suppress the immune system. I am worried about getting cancer and other infections. Are these medications usually safe and well tolerated? Is it best to start this level of treatment even though I have mild CD?
A: Crohn’s disease in the small intestine often does not cause diarrhea, since it is the job of the colon to absorb water and create formed bowel movements. If your Crohn’s is limited to the small intestine, it makes sense that your colon is still doing its normal job of making regular, formed bowel movements. Sometimes the symptoms of small bowel Crohn’s, like bloating, or abdominal pain, can be harder to notice if they happen slowly over time. Some types of eye inflammation can be linked to bowel inflammation, and Humira is also indicated for the treatment of one type of eye inflammation called uveitis. Yes, the medications are usually safe and well tolerated. In Crohn’s disease, for reasons that we do not completely understand, your immune system is doing something it should not---it is attacking your small intestine. Humira and Imuran are meant to turn down this overactive immune response. Most patients tolerate these medications well, and your health care team will be carefully monitoring you to make sure this is the case. Risks of cancer are very low as well. There are several things you can to do help keep yourself safe and help prevent infections and cancer, which include keeping up to date on vaccinations and cancer screening. The Crohn’s and Colitis Foundation has made a checklist for the best ways to maintain your health, which can be found here:
https://www.crohnscolitisfoundation.org/sites/default/files/2019-09/Health%20Maintenance%20Checklist%202019-3.pdf
When your doctor makes a decision regarding the best treatment for you, the decision includes not only how active your disease is right now (thankfully mild for you), but also the risks of the disease becoming worse or developing complications in the future. Therefore, even though the disease may be mild now, it likely is important to treat it now, so that you can enter remission, and it never becomes anything more than mild.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2020
Q: My UC was diagnosed in 2009. Prior treatments include 6MP, canasa, steriods (oral and enema), Remicade. I have been on Humira 6+ years, which has managed UC and inflammatory arthritis. For the past year, have been developing chronic sores on skin which has been recently diagnosed as chronic HSV2. Dermatologist believes I will be on Valtrex indefinitely. Considering a switch to Entyvio or stopping biologic treatment. Any research specific to HSV2 and biologics?
A: Very few cases of HSV2 associated with anti-TNF biologics have been reported in medical journals. Most cases seem to have been associated with patients on multiple immunosuppressants, such as prednisone and/or 6MP or Imuran along with a medication like Humira or Remicade. Risks and benefits of your medications are important to discuss with your health care provider to come up with the best plan that may work for you. Keep in mind that stopping biologic treatment may lead to a flare of your UC or arthritis, which could lead to steroid use. Steroids are much higher risk than biologics when it comes to infectious risk. Entyvio (vedolizumab) is thought to be an intestine specific medication, and thus far, has not been associated with risk of other infections. However, Entyvio may not control arthritis and may require that a second medication be started to control the arthritis.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
September 2020
Q: I was diagnosed with mild/moderate colitis three years ago. I’ve been on mesalamine enemas (daily) and max doses mesalamine tablets (daily) for over a year since then. I felt great for a long time, but now I have what I would guess is a flare. Could my symptoms be a reaction to the mesalamine? I read somewhere the medication can make symptoms worse and I’m not sure if over time on max dosing daily, my body may have started to react differently to the meds?
A: There are several reasons that patients might have increasing symptoms after feeling well for a period of time. Even when patients feel well they might have subclinical inflammation, and this increases the risk for clinical symptoms/relapse (flare). Most patients who experience an intolerance to mesalamine will experience early in treatment course, so I think I would look at other reasons for active symptoms. Your health care team should assess for infection as possible cause and consider other objective assessments (CRP, fecal calprotectin or possible endoscopy). If you have active symptoms but evaluation is without active disease, consider other causes for symptoms. If you have active inflammation, the location of the inflammation will help your team guide therapy.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
September 2020
Q: I am 19 and was recently diagnosed with ulcerative colitis. I have a diet without allergens, glutenfree, and low fiber. I already tried steroids, I'm taking pentasa (enema and granules) and starting ozone therapy, but I'm still in the active phase, in which I have been almost 4 months. how long is normal to be in the active phase? if ozone therapy does not work for me either, what treatment will it be next?
A: First I think that active symptoms/inflammation x 4 months is too long. If you did not have a response to steroids that raises a concern for more severe disease and that mesalamine therapy (Pentasa) is probably not the optimal choice of therapy (only indicated for mild-moderate inflammation and not indicated in steroid refractory cases). Ozone therapy has been studied in limited number of patients and has minimal data in the use in IBD. The study was done with mild-moderate disease taking sulfasalazine, the study done in 2010 looked at outcomes/improvement by both symptoms and endoscopy at 4 weeks. I would say at most I would give this regimen 4 weeks, however ensure you are under the care of an IBD specialist who has done a thorough assessment for other possible causes for a prolonged flare.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
September 2020
Q: I was diagnosed with lymphocytic colitis this year at 23. My doctor is a bit puzzled as I guess I am young for this form of colitis, and I’m not on any daily medications that have been known to
lead to it. I was just curious if there are any other potential causes I should bring up in my next appointment. I was also interested if, without an exact cause, if this is likely to be something, I will have to consider long-term medication for.
A: We are starting to see lymphocytic colitis (a form of microscopic colitis) in a younger population than previously described. If you are not taking an acid suppressing therapy (PPI) or NSAID which are the more common associated therapies but not required for the diagnosis. In addition we see this more commonly in those patients who smoke cigarettes. Patients with microscopic colitis are more likely to have a diagnosis of celiac disease, it would be important to have assessment for this as well. Some patients do require long-term medication, it depends on how you respond to initial course of treatment. My experience with my younger patients diagnosed with microscopic colitis is that they respond well to treatment but often require a maintenance (longer term) medication to continue to stay well.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
September 2020
Q: My son has colitis he has been on Infliximab for about 4 years his insurance made him switch to a bio-similar Infliximab-abda. He has had two treatments with the new medication and recently presented with two small blood clots, one in each lung. I feel the switch was the cause of the clots. Is there any research on side effect occurring in patients switched to a biosimilar after being stable on the original medication?
A: I am sorry to hear about your son’s recent complications. There have been multiple studies looking at the safety and effectiveness of biosimilar therapies like your son is on. There is no increased risk in biosimlars than that of Remicade (originator therapy). The things to consider when a patient with IBD develops new blood clots is to ensure that his inflammation is under control on his therapy and evaluation for possible hypercoagulation disorder. But based on what we know in clinical trials it would be hard to link his transition to biosimilar to new blood clots.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
September 2020
Q: I am a 29-year-old Male, taken Humira for Crohn’s for 8 years, and just had a Small Bowel Resection in March. My GI stopped my Humira and opted for me to not restart it. She wants me to try another Biologic and after discussing the options we landed at Stelara. Is it common for one to start Stelara post-surgery after their disease slowly progressed while on Humira which lead to surgery? I cannot find any definitive information regarding my specific combination or scenario.
A: I hope that you are recovering well from surgery. It is hard to say without knowing more details of your case. If you had adequate levels of Humira (>7.5) and active disease at the time of surgery it is reasonable to consider alternative treatment options as a post-op prevention strategy. However there are times (again depending on the case) that you had surgery because the disease already resulted in scar tissue and that the surgery was not a true failure of treatment but it could be been due to progressive disease prior to Humira or subtheraputic dosing of the Humira. If you have a concern about moving forward with Stelara (which is a very effective therapy for Crohn’s disease) I would consider a formal 2nd opinion.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2020
Q: I have Crohn’s and have been on prednisone for more than 20 years. Is this normal or ok to be on this medication for so long.
A: The short answer is no. The longer answer is that prednisone is a medication that should only be taken in the very short term, and with a finite plan in place for a longer-term, safer medication to take that avoids steroid use. Long-term steroid use is wrought with side effects and is not a safe choice for treatment of inflammatory bowel disease. It is crucial to speak with your gastroenterologist to come up with a formal plan to transition you safely from steroids to a steroid-sparing medication that has been shown to benefit patients with Crohn’s disease.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
July 2020
Q: I was diagnosed with collagenous colitis (microscopic) 8 yrs. ago. I would like to know if budesonide is a successful treatment for this condition. My doctor recommended it, but I am concerned with the side effects. What is the maximum amount of time that this medication should be taken.
A: Budesonide works very well in patients with microscopic colitis, and studies pitting the medication against placebo show that those patients who took budesonide did significantly better than the placebo group. Even though budesonide is a steroid that has little systemic exposure because of how the body metabolizes it, we do not like to use budesonide in the long term, because adverse effects of long-term steroid use is not to be ignored. Generally, for microscopic colitis, the recommendation is to be on the medication for about 6-8 weeks, and then begin a taper and eventually come off the medication entirely.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
July 2020
Q: I was diagnosed with UC one month ago. I am a male in 60s and in very good physical condition - except for UC. I have taken prednisone for 4 weeks, tapering down each week from 40mg a day to 10 mg and now finished. I just started a course of mesalamine by mouth and a suppository, and it seems to be working. I’m worried about hair loss, and if there are any ways to overcome this specific side effect.
A: It’s great to hear the mesalamine is working well to treat your symtoms and the inflammation. Unfortunately, hair loss is a known potential side effect of mesalamine. It is reported to occur in <3% of patients. There are other reasons for hair loss in patients with IBD: telogen effluvium, which usually occurs in the context of active disease, nutritional deficiencies, and stress, for example. Speaking with a dermatologist about concerns of alopecia, or hair loss, may help with overcoming this problem.
ANSWERED BY:
Sophie Balzora, MD
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
Clinical Associate Professor of Medicine in the Division of Gastroenterology and Hepatology at the NYU Grossman School of Medicine
May 2020
Q: I have Crohns disease and require monthly B12 injections as I cannot absorb it through my small intestine. I'm not able to get my B12 shots during the current Covid 19 crisis because my physician’s office is only seeing very ill patients. My physician ordered a prescription B12 nasal spray, but it's not covered by my health insurance and cost is $6,000 per month. What is my best OTC, non-pill-form option for me during this time? My last B12 injection was in early February.
A: As you mentioned, some patient’s with Crohn’s disease have impaired ability to absorb vitamin B12 taken orally (whether as pills or in the diet). Therefore, monitoring of B12 levels and correction if needed will be prescribed. In general, total body stores of vitamin B12 are approximately 2-5mg with about half of that in the liver. If B12 intake stops, deficiency typically does not develop for at least 1-2 years. So, it may be reasonable to wait till your doctor is seeing patients in clinic again and then resume your prior injections. Alternatively, there are studies that showed taking high dose (1000 to 2000 mcg) oral vitamin B12 daily can still be absorbed (about 1% of what is ingested) and maintains B12 concentrations.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
May 2020
Q: My adult niece has UC and was on prednisone for 4.5 months. Once tapered down she seemed to experience a psychotic episode. While doctors were able to mitigate the episode, they took her off of Adderall which she desperately needs to manage her day. Is it common for prednisone to lead to psychotic events (and how long they last?). What can one take in place of Adderall that won’t feed the psychosis?
A: This is an important topic and can be quite distressing to patients and families. Prednisone is an effective short-term treatment for patients with ulcerative colitis; however, a known side effect of it is psychosis. There is limited research on how often this occurs, but the data suggests <10% of patients develop psychosis, and this is more common with higher doses (>20mg daily) for a longer time period. Keep in mind, prednisone is used as a bridge to another therapy and ideally other medications will be used long term to control UC symptoms. Once stable on another medication, resuming previously used medications, such as Adderall, under the supervision of her PCP may be possible.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2020
Q: I’m 57 and have had Crohn’s in my colon for decades. I went through each of the biologics one by one until they each failed. I had a total colectomy last August and now no longer take biologics or prednisone. Two months after surgery I started having severe muscle/tendon and joint pain. Is this refractory inflammation after being on biologics? Will it go away. over time?
A: It is important to remember that Crohn’s disease can lead to inflammation anywhere along the gastrointestinal tract, from the mouth to the anus. So, despite the inflammation previously being localized to the colon, the possibility for recurrence in other areas of the GI tract should be explored. In terms of joint manifestations of Crohn’s disease, they are more common in patients with large intestine (colon) involvement. Blood tests can be checked to broadly evaluate for inflammation but can reflect both inflammation in joints as well as the intestine, so they can be of limited value. Follow up with a gastroenterologist to evaluate for recurrent Crohn’s disease and possibly a rheumatologist may be warranted.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
March 2020
Q: I have Crohn's and began taking Remicade in 2017 with no issues. At the end of 2019 I started having pains in joint/muscle. The pain started in the thighs, moved to the knees. It moves around the body to different joints daily or every 2-3 days. It gets bad into the evenings and calms down during the day. I also have a rash around the under arms and itchy welts that appear on the torso once in a while usually the size of a golf ball. Can these symptoms be from the Crohn or medication?
A: Extraintestinal manifestations can occur in up to 25% of patients with Crohn’s. These can be rashes, joint pains or vision problems. We usually recommend working with a rheumatology and dermatologist in these cases. Sometimes, medications like Remicade can cause lupus-like reactions or even types of joint pain called “arthralgias.” Another phenomenon that may be happening is that your body is making antibodies against the Remicade in your body. This can be tested for with a standard blood test that will also check for the appropriate concentration of Remicade in the blood.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I am a 45 year old female newly diagnosed with Moderate UC on both left and right sides of my colon. My GI and I have narrowed options down to Imuran or Remicade/Humira. My main concerns are immune suppression and side effects. Can you share your experiences from your patients and input to help inform my decision? I realize treatment response and side effects are highly individualized, but I am trying to get a crowd source view of the two to help inform my decision with my doctor.
A: With the advent of improved understanding and monitoring mechanisms with the “biologic” medications like Remicade and Humira, we’re realizing these have a better safety and efficacy profile than the Imuran type medications. Make sure you attain age-appropriate vaccines, including influenza and pneumococcal series, which will help with infection risks. Between Remicade and Humira, it’s really up to the patient whether they want infusions (Remicade) every 2 months or injections (Humira) every 2 weeks. Safety and efficacy are similar in this class. Also consider Entyvio or Stelara as future options.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
March 2020
Q: I was diagnosed with UC- pancolitis in Sept 2019 and given 1.5mg Apriso. This helped for a month with less BM/blood but symptoms returned after about 45 days and treatment failed. He ordered fecal calprotectin with result of over 2000 μg/mg, yes over 2000. I’ve been on prednisone for 8 weeks. My doctor recommended Entyvio but my insurance said no. How can my doctor get my health insurance to approve Entyvio bypassing step therapy of Humira/Remicade?
A: Humira or Remicade are acceptable therapies for your current situation. Please see answer posted this month for a discussion on biologics. If you absolutely want Entyvio, there are resources on the Crohn’s and Colitis Foundation Website for appeal letter samples that you can send to the insurance company or to your doctor office to use as a template.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
November 2019
Q: I have been given mesalamine enema and 4 mesalamine pills daily. It has only been one week since my diagnosis and medications, how long before I start seeing a more normal stool? Now my stool is water and sometimes droplets of blood. I am going to the bathroom about 5 times a day, this is how frequent I was going before as well.
A: Usually we give this a few weeks, but I would say that mesalamine should start to work within a few days. If it does not work, some people have the opposite effect (makes their diarrhea worse) or your colitis may just be more severe that the mesalamine is not enough. The latter is usually what happens. This is when I’d be starting to discuss potentially needing the biologic therapies if you are not doing significantly better on the mesalamine.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: I was diagnosed with Crohn's colitis in 2009. After several good years on Remicade, despite maximal dosage, the drug has now failed. After about 6 months on Xeljanx, that drug has now failed as well. My GI thinks it is time for me to seriously consider colectomy. I am having a tough time with this idea. How do I decide if it is worthwhile to try Entyvio or a clinical trial. What information can you share that can help me make the best decision?
A: There are other medications that you can try. Since you responded to remicade initially, adalimumab (humira) and certolizumab (cimzia) is a choice. Keep in mind that there is vedolizumab (entyvio) and also ustekinumab (stelara), in addition to clinical trials. So, there are a lot of choices out there to consider. Surgery is reasonable to consider, depending on how sick you are, but you should talk to your doctor about other non-surgical choices above.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: My adult son has Crohn’s disease and now into his 5th year of remission on Remicade. He is 23 and has been offered a job outside of the US. He is seeking recommendations/suggestions on alternative treatment that doesn't require IV. He is seeking other options that may allow him to freely travel without infusions every 8 weeks. Any information is on the pros and cons of switching medication or other suggestions is appreciated.
A: If he is able to get Remicade outside of the US, that would be ideal. I have had patients in this scenario. Alternatively, you can switch him to Humira, which is in the same class. Finally, if he’s doing very well, you may want to consider doing a colonoscopy with your GI doctor to see if he can de-escalate off of remicade. This may or may not be appropriate as I don’t know his IBD history fully, but your doctors should be able to help you to trouble shoot this, as it’s a common scenario.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: I have Crohn's and have tried several medications, and none have seemed to help. My doctor is discussing the use of a biologic treatment. What is the best way to determine which biologic treatment to use?
A: There isn’t a clear winner with the different biologics. I would say that it depends a lot on what your insurance will cover, and where your Crohn’s disease is located. If you are not doing well on the other medications, then I too would recommend biologics, and all of them would likely be better than what you are doing now. The Crohn’s and Colitis Foundation has a great web site where they discuss all of the different medications, but your doctor should hopefully steer you in the right direction.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2019
Q: What has been the success or failure of stem cell treatment for ulcerative colitis? How do I find stem cell clinical trials for the treatment of UC that are actively recruiting?
A: The data for stem cells is more common in Crohn’s disease, which overall studies have shown slight or no benefit, which is disappointing given the initial potential. I am not aware of many studies in UC. While this is still a promising field, the good news is that we so many more therapies for UC that are being tested, and we are understanding the safety issues better as well.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
October 2019
Q: I have UC and have recently been prescribed uceris rectal foam to manage a flare up. I am supposed to take the med for 2 weeks. I am also breastfeeding my newborn. Is this medication ok to take while breastfeeding?
A: Yes, it is. The absorption of uceris topical foam is minimal. Of what is absorbed, most is broken down by the liver and very little will every make it to the blood stream or the breast milk.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: How long is it safe to stay on budesonide? I have lymphocytic colitis, and every time my doctor had me taper off my symptoms came right back. Now he says I may need to stay on it indefinitely. What are other treatment options for lymphocytic colitis?
A: While the systemic steroid exposure is low, there are some adverse effects of long-term budesonide treatment, the main one being adrenal gland suppression. Some patients also experience some other steroid side effects, such as poor sugar control in diabetics or irritability. Budesonide’s use is safest when limited to 12 weeks. The return of symptoms is of course a limitation. If long-term budesonide use is planned, use should be accompanied with discussion of risks and benefits and using the minimum effective dose that controls symptoms (while we start at 9 mg, many patients can taper to 6 mg or 3 mg if remaining on the budesonide). Another option is to use intermittent recurrent courses of budesonide if able. Some other tips include discontinuing any culprit medications (such as non-steroidal anti-inflammatories), adding loperamide or cholestyramine to the regimen or adding bismuth subsalicylate. Other options (based on small case series) for long-term maintenance treatment of lymphocytic colitis are biologic agents (anti-TNF like infliximab or adalimumab) or immunomodulators (such as azathioprine).
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I was diagnosed with ulcerative colitis in 2016. In a recent colonoscopy there was no ulcers and no inflammation found. I am presently on mesalamine, gained a lot of weight and still have 4-5 soft bowel movements a day. If I have no ulcers and inflammation why do I continue to have so many bowel movements?
A: Other causes for the frequent bowel movements could be lactose intolerance, a motility disorder in the GI tract, or an infection, or celiac disease, among others. A work-up could be started especially if this affects your quality of life. Sometimes there is some scarring in the recovered colon and that could result in continued frequent bowel movements.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: My wife and I are trying to conceive. I have UC, have been on mesalamine 4.8g for years with no flares. Got a flare about 2 1/2 months ago and have been taking prednisone 40mg to help. I was told I will need to switch to a biologic in coming weeks. Is there any issue with trying to conceive while taking the prednisone and soon the biologic?
A: No. There are no issues in men and you can try to conceive while taking prednisone and biologics. Avoid the medications: methotrexate and sulfasalazine for 3 months as they can affect/lower sperm count. Otherwise for men, it is okay to start a biologic with the eventual goal of tapering off the prednisone soon. Women should not try to conceive in a flare due to the risks of active inflammatory bowel disease to the pregnancy.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: My daughter was diagnosed 11 years ago with Crohn’s disease. She has been in remission without meds for the last five years. Recently diagnosed with recurring anterior uveitis and burning tongue. A new GI Dr and had all the tests done again and diagnosed she was diagnosed with mild to moderate Crohn’s. There was no discussion on previous meds that helped the doctor just said we treat Crohn’s from the top down now, and he wants her on adalimumab. Is top down the way of future treatment?
A: It is true, an aggressive treatment approach and starting with biologics in a top-down approach has been showed to help Crohn’s patients more than the step-up approach in moderate-severe Crohn’s. This minimizes the long-term disease complications. The choice of adaliumumab its reasonable because it is a treatment for uveitis as well as Crohn’s, however, other findings such as colonoscopy results, severity of symptoms are important in order to make this decision and estimate the risk of Crohn’s.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
October 2019
Q: I was diagnosed with Crohn's 10 years ago and on the Remicade right now. But when I have a flare ups, Pentasa works great to calm down symptoms. I asked my doctor to prescribe Pentasa and he said that this medication is absolutely NO for Crohn's (only for Colitis) according some sort of recommendations. What is the harm in taking Pentasa with my Remicade for CD if it works to reduce my symptoms?
A: Pentasa and other 5ASAs have not been showed to have a benefit in achieving remission in Crohn’s studies/clinical trials. These studies were all pooled together and still there was no benefit. While pentasa does not suppress the immune system, and is overall safety profile is good, it has side effects like nausea/headache/rash/ and other rare side effects (such as pancreatitis, pericarditis, nephritis). It is a good practice to make sure that every medicine you take is truly needed. That said, I encourage a discussion with your doctor regarding the definition, duration, and severity of flares that you experience and based on the nature and frequency of the symptoms you can together decide if additional work-up is needed to define them better. This might help guide how you treat them.
ANSWERED BY:
Heba Iskandar, MD, MSc
Associate Professor, Director of IBD Clinical Research
Associate Professor, Director of IBD Clinical Research
August 2019
Q: I’ve had ulcerative colitis for over 20 years. Years ago, I tried Asacol and had an allergic reaction have been told I am allergic to the main ingredient in most uc drugs. I am currently on budesonide and mercaptopurine. I was wondering if some of the new drugs in shot form are safer than steroids. I want to get off long term use of steroids and don’t know the name of the new drugs to ask for.
A: Steroids are associated with the greatest risks of infection, bone loss, and other complications related to ulcerative colitis, particularly with chronic and longstanding use. You are correct to want to taper off prednisone. IF you are steroid-dependent, then mesalamines (which include Asacol) are not likely to be the medications to keep you off steroids, especially with an adverse reaction as you have experienced. The injectable or infusion-based medications you are referring to are called biologics – these are protein-based medications that are used for people who are dependent on steroids or with moderate to severe disease. These agents can induce and maintain resmission (resolution of symptoms, ideally with healing of the colon) and provide the opportunity for people to taper off steroids. Examples include infliximab (Remicade, Renflexis, Inflectra), adalimumab (Humira, Cyltezo, Amjetiva), golimumab (Simponi), vedolizumab (Entyvio). You should discuss potential options with your IBD provider.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I was diagnosed with Crohn’s last year. A year after diagnosis months I had a huge flare. My doctor has recommended Cimzia. I have begun treatment (week zero and week 2 injections complete) but looking for insights on this drug. Due the flare I am also taking prednisone.
I am experiencing a lot of night sweats and fever spikes. Can these be symptoms of the prednisone or Cimzia?
A: These symptoms can be related to either continued Crohn’s disease activity, medication related adverse effects or infections. Please discuss these symptoms, especially if new since starting certolizumab pegol (Cimzia) and have a plan to assess response or non-response to the agent within 8-12 weeks of starting treatment. If you are unable to taper off prednisone or do not see notable improvements, then you and your provider should re-evaluate to see if this is the right medication and the right dosing at the right interval. If you are having any adverse reactions to the medications, then your provider also needs to be aware.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I have UC for 5+ years under control/remission however had a flare up a few months ago and I’m now taking Prednisone to calm it down which is working. I would also like to try CBD oil since it supposed to help reduce for inflammation. What does the research say about the benefits of CBD with UC?
A: This is certainly an area of interest and need for further investigation. The best studies evaluated the effects of cannabis for Crohn’s disease and did not show consistent meaningful results. We do know that certain symptoms of nausea, decreased appetite, potential fatigue/pain may be improved with cannabis, but there isn’t enough evidence-based data to support the use of CBD oil as a primary treatment for ulcerative colitis.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2019
Q: I have a long history of Crohn's disease (originally diagnosed as Ulcerative Colitis 46 years ago). In the past, I've been on Sulfasalazine, Acacol, Cimzia, Humira, Remicade. Currently I'm on Stelara every 2 months, and it's the best by far. However, the cost is prohibitive. I'm hitting a $1,000,000 lifetime health insurance benefit cap this year at age 60. Is it possible to take Stelara less often (once or twice a year) and take something cheaper in between shots?
A: Unfortunately, the data for using ustekinumab (Stelara) for Crohn’s disease is based on dosing every 8 weeks. Extending the interval longer in between injections increases your risk for loss of response, flares and potentially forming antibodies. You should discuss options to help with the costs of obtaining the ustekinumab (Stelara). There are patient assistance and savings programs that may offset some of the costs of the medication.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
June 2019
Q: I have been on infliximab for about 3 months and my hair been coming out and has become really thin. Can this be as a result or the medication or something else. What can be done to stop the hair loss?
A: Hair loss can be a rare side effect of anti TNF agents like Infliximab and it is considered a class effect.
If you were very ill with nutritional deficiencies and emotional stress prior to starting Infliximab, there can be hair loss during recovery which will resolve with time. This is called Telogen effluvium is a form of diffuse, nonscarring hair loss that presents as a transient or chronic loss of hair. Hair loss in telogen effluvium occurs because of an abnormal shift in follicular cycling that leads to the premature shedding of hair.
Best is to consult a dermatologist, who will be able to do further investigations to find the cause and decide on treatment options including considering discontinuing of Infliximab.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
May 2019
Q: I have had the diagnosis of Crohn's Disease since 1992. In the past 10 years or so, I have had occasional iritis when my Crohn's is flaring. My GI doesn't seem to be concerned, but my optometrist is worried about using steroids too much on my eyes and that it might cause glaucoma. How concerned should I be about using steroid drops on my eyes every 3-6
months?
A: Uveitis occurs in 0.5 to 3 percent of patients with IBD. Anterior uveitis is also called iritis. Uveitis may precede diagnosis of IBD and may be associated with arthritis. It is four times more common in females as compared with males. Prompt diagnosis and therapy with topical or systemic steroid is necessary. Secondary glaucoma and rarely blindness may occur if management is delayed. The course of uveitis usually does not parallel the activity of IBD. Therefore, I would recommend you get evaluation by an ophthalmologist as soon as possible to confirm the diagnosis. I don’t know the exact risk of glaucoma related to topical steroids but likely it is low.
This may be episcleritis which occurs during flare of intestinal IBD activity. Episcleritis, inflammation of the episclera, the layer directly beneath the conjunctiva, is the most common ocular manifestation of IBD, occurring in 2 to 5 percent of patients. If that’s the case and this happens every 3-6 months, that is an indication of suboptimal control of your crohn’s disease. That means your current medication regimen needs to be adjusted to better control the disease. This may require checking the drug level if you are on a biologic or consider switching to a biologic if you are not on one. Of course, infection needs to be ruled out but less likely due to repetitive nature.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
May 2019
Q: I was diagnosed with lymphocytic colitis in December. Prescribed Urceris, (budesonide 9mg) for eight weeks, then tapered to 6mg for two weeks, and now on 3mg. All symptoms have returned and my doctor said to go back to 9mg for 12 more weeks. I'm worried about so much corticosteroid usage. Is this truly safe for such a long period of time?
A: You are taking Entocort 3 mg pills, which the effective form of budesonide for microscopic colitis (lymphocytic colitis and collagenous colitis). Uceris is the formula that is mainly released in colon and it comes as 9 mg pill.
Entocort is a locally active corticosteroid that has been used in patients with microscopic colitis, a study in 2018 confirmed its efficacy compared to placebo in lymphocytic colitis. As Entocort is locally acting and its systemic side effects are less than other oral corticosteroids like prednisone. This is due to its extensive breakdown in liver resulting decrease systemic exposure. Therefore, this is the safer form steroid.
Although there is symptomatic improvement in symptoms with few days of therapy complete resolution needs at least 6- 8 weeks of Entocort 9 mg daily followed by taper over 1 month. If there is relapse of symptoms during taper, 9 mg daily treatment can be extended into 12 weeks or longer before tapering. Your treatment recommendation is the standard of care. We need to also make sure to eliminate triggers such as smoking and NSAIDs use as well as infection, celiac disease, hyperthyroidism, etc.
Even after elimination of other causes and triggers, about 10-20% of patients may not respond to Entocort. In these patients it may be necessary to use immunomodulators like azathioprine or biologics such as anti TNF agents (Infliximab, Adalilumab, etc)
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
May 2019
Q: Just diagnosed with moderate Crohn’s disease in small bowel with narrowing in terminal ileum. My main complaint is abdominal pain. The doctor wanted to put me on 40 mg of Prednisone for 2 weeks but I’m a chicken (ha) so I choose Entocort. It’s been 5 days and I still have horrible stomach pains and some back pain. Can I switch over to prednisone without problems?
A: Degree of response to medicatherapy of crohn’s stricture/narrowing depends on amount of active inflammation vs scarring/fibrosis. Current medical therapy is not effective against fibrosis but will decrease inflammation resulting in opening/decreasing the narrowing of your terminal ileum. Entocort 9 mg is usually very effective but you can try switching it to prednisone to see if you have better response. I would also recommend obtaining abdominal imaging such as CT enterography or MR enterography to better define the extent (more stricture event tight ones) and severity of small bowel disease. If it is moderate disease you will benefit from biologic therapy with or without immunomodulator to induce remission and maintain remission. Staying on low residue diet will also decrease your abdominal pain if it is related to sluggish passage of material through the narrow terminal ileum. If you have critical/severe narrowing with dilation of bowel before/proximal stricture, you may need surgical intervention in near future.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
May 2019
Q: I was diagnosed with Crohn’s in 1998 and then diagnosed with fistulizing Crohn's in 2000 after a major surgery. I started Remicade in 2001. It has kept me in remission and fistula free until last year. I recently became aware that for the past year I have been getting Inflectra, not Remicade. Could this change in medication contribute to the development of fistula? Is there any research about the changes patients have when switched from the original biologic to a biosimilar?
A: There are multiple studies showing equal efficacy of Inflectra to its originator Inflximab. More important question in your situation would be the adequacy of the drug level as well as presence of antibodies against the drug. I would recommend performing therapeutic drug monitoring to get this information if this has not been done before.
When was the last time you had colonoscopic evaluation or abdominal imaging to objectively assess the treatment response while you were still on Infliximab? If it is few years ago, it is possible you had partial controlled disease for some time (while you were on Infliximab) prior to developing the new fistula. If this is the case as mentioned before, therapeutic drug monitoring will help you to figure out what could be the best possible therapeutic change to get your disease under control again. If you have perianal fistulizing disease, MRI of rectum will better define the disease and examination under anesthesia with seton placement will facilitate the healing with correct medical therapy.
ANSWERED BY:
Lilani Perera, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: I have been using Remicade treatment for 5 months. I have been getting skin ulcers, or boils since beginning use of this form of treatment. These not only look nasty but are very painful. This is my third skin issue. Is this a common side effect?
A: Remicade, though very effective for the treatment of IBD, has many potential side effects, including skin side effects. Up to approximately 10% of patients, may experience some form of skin related side effects, including rashes and itching. Of the skin related issues, development of psoriasis appears to be the most common. In your case, I would recommend promptly speaking with your gastroenterologist and possibly seeing a dermatologist for further care. In mild cases of psoriasis, the Remicade is continued and topical creams are used to control the skin related side effects. In more severe cases, Remicade (and related medications) are stopped and alternative therapies are used.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: I started Azathioprine 50 mg 2x daily about 30 days ago. Last week I started experiencing stomach bloating, gas, pain between my breast and then sharp pains on left side, radiating to my back and up to my shoulder. I stopped taking the pills, called doctor and visited about pancreatitis symptoms. Is this a side effect? Should I try again? I am on Remicade every 8 weeks and the inflammation continues.
A: With azathioprine, pancreatitis is a rare, but reported side effect. This does not appear to be related to the dose of the medication, but instead an idiosyncratic occurrence. If pancreatitis was confirmed, I typically do not resume azathioprine (or 6-mercaptopurine), as the patient may have recurrent episodes. Alternatively, a growing body of studies suggests monotherapy with Remicade (and other biologic therapies) dosed adequately is as effective as combination therapy (Remicade and azathioprine). Therefore, in patients unable to take azathioprine, I typically would recommend monotherapy with a biologic, such as Remicade, and checking the drug concentration to guide dosing.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: I recently started Entyvio and realize that it will take a while for it to kick in. In the meantime, my doctor's office suggested Metamucil to help add bulk to my stool which is currently just liquid. I have always been careful to avoid too much fiber and I am concerned that the Metamucil will cause more diarrhea and not less.
A: Fiber, or said another way, dietary fiber is actually composed of 2 types of fiber, soluble and insoluble fiber. Soluble fiber, such as the psyllium found in Metamucil, dissolves completely in water and forms a gel like consistency. When ingested, this helps add bulk to stool and soften stool, so it may be recommended for both diarrhea and constipation. Insoluble fiber, which is the type of fiber found with wheat and some fruits and veggies, does not dissolve well and also adds bulk to stool, but may also have a laxative effect. When adding additional fiber to the diet, start slowly at first (perhaps ½ tablespoon initially), as some supplements may cause bloating and abdominal pain, and then increase gradually as tolerated for the desired effect. For additional information related to fiber, consider reviewing the Crohn’s and Colitis Foundation Diet and Nutrition Handout (https://www.crohnscolitisfoundation.org/assets/pdfs/diet-nutrition-2013.pdf).
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: I have Crohn’s and I just had surgery to drain an anal abscess. There was a fistula, so they placed a seton. What is the treatment for fistula? Are setons permanent? Can fistula heal with medication, like Remicade? My main concern is bowel continence.
A: Unfortunately, patients with Crohn’s disease may develop fistulizing disease around the anus, also termed peri-anal disease. This can lead to complications such as abscesses, which require prompt recognition and management. Overall, treatment of Crohn’s disease with peri-anal involvement involves close coordination between your gastroenterologist and colorectal surgeon. Once the abscess has been drained, a seton is left in place to prevent accumulation of a new abscess. In the meantime, your gastroenterologist may use a combination of therapies (including biologics and antibiotics) to gain control of the inflammation that led to formation of the fistula. Once this is controlled, the seton can be removed and your team will monitor you for improvement and closure of the fistula tract with medications. In cases where the fistula tract dose not close, then additional surgical interventions may be required, with the goal of closing the tract and preserving continence.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
April 2019
Q: Have been taking Pentasa (mezalazine) for 30 years with no problems but am now experiencing very bad light sensitivity. Even with spf 30 cream getting extreme redness, burning, tingling and swelling. Happens even indoors when in the light. Could it be my tablets causing this?
A: Skin reactions are a rarely reported side effect of mesalamine products, including Pentasa. However, since this is a rare side effect not much has been reported. In a study from the UK, nearly 3 million prescriptions of mesalamine were written and only 14 cases of skin reactions were reported. I would review with your primary care physician and gastroenterologist all your medications, in case another medication is the culprit. If no other medication causing this side effect is found, I would discuss with your gastroenterologist alternative therapies or possibly seeing a dermatologist for further recommendations. In general, patients with IBD should practice skin care and regularly use sunscreen for protection.
ANSWERED BY:
Rajesh Shah, MD
Gastroenterologist
Gastroenterologist
March 2019
Q: I have had Crohn’s since 2001 and have been managing it well for 6 years with infliximab. Side effects have included skin issues. Recently I got strep throat that has recurred 3 times in the last month or so, with about a week between ending the 10-day antibiotics (amoxicillin, penicillin and currently Cefdinir) and subsequent recurrences. Could the medication be wearing down my immune system? Should I talk to my doctor about switching from infliximab to another drug?
A: Infliximab does suppress the immune system and, therefore, makes you more susceptible to a variety of infections (including strep throat). This immune suppression is why infliximab works against Crohn’s disease, but infections can be a side effect. However, you also mention that your Crohn’s disease is managing well with this medication. This makes stopping infliximab a complicated and individual decision. With a switch in medicine, there is a risk of a Crohn’s flare. For that reason, when infliximab is working well, I am hesitant to recommend stopping it unless it is causing side effects that the patient can not tolerate. This is where your care team comes in to help guide you through an honest discussion of the risks and benefits of continuing on this therapy versus switching to an alternative medication. Once you have all of the information, you can decide together what would be best for your individual case.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
March 2019
Q: I was diagnosed with Crohn's disease 15 years ago. Does CD affect fertility? I was also wondering if there has there been any research done about the long term use of biologics and how they can affect fertility. I’m 32 and have been on a biologic for 12 years and can not get pregnant.
A: Thank you for this great question. There have been several studies looking at fertility in Crohn’s disease and ulcerative colitis. When Crohn’s disease is in remission (no inflammation remains), there is no sign of decreased fertility. Biologic medications have also never been associated with decreased fertility. There are studies showing a decreased birth rate in Inflammatory Bowel Disease patients. However, researchers took those studies a step further and investigated the reason for the decreased birth rate. They found that the Inflammatory Bowel Disease subjects studied more frequently did not desire a pregnancy compared with the non-IBD subjects. Once they narrowed the studies to subjects who desired pregnancy, there was no decreased fertility among all groups.
That said, there are a few individual situations that could impact fertility. If you have had surgery for Crohn’s disease, it is possible that adhesions (or scar tissue) could affect your fallopian tubes. If you have active Crohn’s inflammation, there could also be associated inflammation or scarring of the fallopian tubes. Finally, some medications (not biologics) have been associated with decreased sperm count in male patients – but that decreased fertility is not seen in female patients.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
March 2019
Q: I was recently dx with CD. I have inflammation in my ileum and also some scar tissue. I am torn about treatment. I cannot decide if I want to take the either HUMIRA, Remicade or another treatment. I worry about the side effects. My other option is laprascopic surgery to remove the diseased area. Surgeon said that I would have a good 10 years of normal eating and may not have to take the meds. I am looking for any information on how to proceed or that can help me make a treatment decision.
A: The question of medications versus surgery can be a common situation that arises. The right answer is often very individual depending on your situation. If the problem area in your ileum is mostly scar tissue, then medication may not be able to open it up enough to relieve your symptoms. In that case, surgery is the necessary intervention. However, if there is a large component of the area that is inflammation, then medication may be able to lead to a very significant improvement and prevent or delay any surgeries. Calming down inflammation prior to surgery often also allows the surgeon to limit the amount of intestine resected and improve your healing from a surgery.
While hearing the long list of possible side effects is often alarming, it is important to remember that the risk of untreated Crohn’s disease is greater than the risks of these medications. Most people tolerate the medications very well. Finally, I would say that the course after surgery can vary greatly. Remaining off therapy for 10 years is possible, but not the most common outcome. More commonly, Crohn’s disease can begin to return and require treatment at some point after surgery. Guidelines recommend repeating a colonoscopy 6-12 months after surgery to begin monitoring for return of Crohn’s disease.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
February 2019
Q: This year will mark 10 years with ulcerative colitis. After being prescribed numerous amounts of medications with different side effects I decided to take a different approach and try things more natural. I ended up regaining control of my symptoms until recently but now I am looking into other forms of treatment other than pills. Does acupuncture help with symptoms?
A: The efficacy of alternative treatments in ulcerative colitis is a frequently asked question. Acupuncture may help patients better tolerate their ulcerative colitis symptoms, but at this point, there is no evidence that acupuncture helps decrease active intestinal inflammation. Since our goal with any treatment (i.e., remission) in ulcerative colitis is to decrease active intestinal inflammation in addition to eliminating symptoms, acupuncture on its own may not achieve the results we would like. However, if combined with other therapies that have been studied and found to cause remission in ulcerative colitis, acupuncture may be a better choice.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I’ve had Crohn’s since 2001 and have been managing it well for 6 years with Remicade. Side effects have included skin issues. Recently I got strep throat that has recurred 3 times in the last month or so, with about a week between ending the 10-day antibiotics (amoxicillin, penicillin and currently Cefdinir) and subsequent recurrences. Could the Remicade be wearing down my immune system? Should I talk to my doctor about switching from Remicade to another drug?
A: This is an interesting question. Medications such as infliximab (Remicade) are associated with a higher risk of bacterial infections like those that cause strep throat. As you suggested, this is because infliximab decreases the immune systems’ ability to fight off infections. If the diagnosis of strep throat has been made adequately on each occasion and you have been on appropriate antibiotics in each case, then it may be time to speak to your gastroenterologist about the role infliximab may be playing in the infections. At that point, your gastroenterologist can decide on the next best step for the treatment of the Crohn’s disease.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I have recently been diagnosed with Crohn’s disease involving distal ileum, few aphthous ulcers in mid and distal small bowel. Does Pentasa sachets works for Crohn’s when small bowel is involved? There are contradictory statements by doctors; some say it the slow release Pentasa works and some says it is not effective. Please clarify.
A: This is a good question. Medications like Pentasa generally are not effective for Crohn’s disease regardless of its location. The release mechanism of drugs like Pentasa seems to make little difference in its effectiveness.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
February 2019
Q: I was recently diagnosed with Crohn’s Disease. My symptoms right now are severe stomach pain several times a week. My GI first prescribed budesonide but the side effects were bad so he has mentioned Remicade/Humira as another option. He is hesitating and wants to redo pill cam study before starting. Will the disease always at some point get worse if I am not on any medication?
A: Thanks for your question. Generally, the chances of your disease worsening are based on the severity of your disease at diagnosis. The severity of your disease is based on your clinical symptoms, labs, imaging, and the endoscopic evaluation. For instance, if you had mild Crohn’s disease at diagnosis, the risk of the disease progressing is lower than if you had moderate or severe Crohn’s disease at diagnosis. Your GI can help determine where you fall in the mild, moderate, and severe range. It is very reasonable to reevaluate your disease as your new GI has suggested prior to starting medications like infliximab/adalimumab (aka Remicade/Humira).
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2019
Q: I am 24 years old. I was diagnosed with crohns when I was 23. I’ve been on remicade, after my 5th infusion I had blood test done and it came back with my liver having high enzymes level. I was wondering if it’s the remicade? I hope not since I feel great being on it. I just don’t know what could cause it.
A: Remicade can cause increase in liver enzymes. However, they can also be increased from other causes: inflammation, drinking the night before the blood test was taken, other medications. If you really like how you feel on Remicade I would: a) repeat the liver enzymes b) check the Remicade level. If the liver enzymes are back to normal, which is often the case, I would proceed as prior with the infusions. If they are still elevated, the Remicade level and antibody level are helpful here, as well as maybe an ultrasound of the liver and a check for viral hepatitis.
In brief, I would do more testing before giving up on a drug you feel well on.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I'm a 61-year-old woman, diagnosed with UC 30 years ago. I've been on azathioprine for about 15 years and have been relatively symptom free, though colonoscopies still show evidence of active disease. I have had few flares, and they subside quickly with a week or so of cortisone enemas. Recently I had a sinus infection that failed to clear after two rounds of antibiotics, and I'm now on a third, which gave me wicked diarrhea and triggered a flare. Should I worry about being on aza?
A: Yes, you should worry. I would worry about a) the long-term exposure to AZA and the associated lymphoma risk b) the long-term history of incompletely treated ulcerative colitis and the associated colon cancer risk and c) the possibility that this “wicked diarrhea” is either a flare of Clostridium difficile (C diff) infection.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I have had UC for 10 years now, very mild. Went to my endocrinologists appt recently for my 6-month checkup and my liver enzymes are high. Could my Delzicol contribute to this? I have no other symptoms what so ever.
A: Abnormal liver enzymes rarely are “felt” in any way by the patient. That being said, mesalamines can very rarely (3.2 cases/1 million prescriptions, according to an NIH websity named livertox.org) cause liver abnormalities. Why are you seeing an endocrinologist? It’s more likely that either the endocrine condition you have (i.e diabetes) or the treatment for it (i.e hyperlipidemia, statin medications) has caused these liver enzymes.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: When taking 9 mg a day of Budesonide ER for 8 weeks. Do you need to taper off them the same way you would taper off prednisone and if so, how?
A: I taper my patients to 6mg/d for 1-2 weeks then 3 mg/d for 1-2 weeks, then off. I think it can be done even faster and even stopped completely, esp if there was no response in the first place. We taper prednisone because of concern for adrenal insufficiency but that is unlikely with budesonide.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
January 2019
Q: I have been diagnosed with Lymphocytic colitis. I was taking Budesonide but was taken off when diagnosed with breast cancer. I have been given apriso and Questran instead, but I read that one of the side effects was diarrhea. What are other treatment options?
A: I am not sure why you couldn’t stay on budesonide with breast cancer.
That being said, Apriso and Questran typically treat diarrhea, don’t cause it.
It’s true that mesalamines, which Apriso belongs to, can cause diarrhea in a minority of patients, but generally most patients improve on it. You can also try Imodium.
ANSWERED BY:
Raluca Vrabie, MD
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
Assistant Professor, Department of Medicine at NYU Long Island School of Medicine
December 2018
Q: I was diagnosed with Crohn's and Prostate Cancer within a month of each other. My Crohn's has been in "flare up" status for well over a year. My GI doesn't want to treat Crohn's until my prostate cancer has been treated because he feels that the biologics/immunosuppressants would make the cancer grow faster. However, my oncologists have indicated that they treat both conditions with Humira. Any evidence to support either opinion?
A: Although we would not use a medication like Humira to treat any form of cancer, we know that this class of medication can increase risk of specific types of cancers. The main types are melanoma and lymphoma. Humira and similar medications have not been associated with solid tumor risk like prostate, breast, and lung cancer. It should be safe to consider continuing Humira in this situation to keep the Crohn’s in remission. Another option would be to try a more specific medication like vedolizumab (Entyvio).
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I was diagnosed with Crohn's (terminal ileitis) in 1990. I have done relatively well after adjusting diet - mostly vegetarian. Meds are Pentasa (1500 mg daily) in recent years with the prednisone at times of flareup (obstruction) ~4 times annually. Recent colonoscopy showed stricture at the ileocecal valve. My (new) Gastro specialist has recommended surgery to remove the problem section of the ileum. Is this a common procedure - what is the typical recovery times and likely meds afterward?
A: Surgery is sometimes needed in the management of Crohn’s complications, including strictures. If the stricture looks more like scar tissue (fibrostenotic) from colonoscopy and MR or CT imaging, then surgical resection is reasonable. If the stricture is short (less than 3cm) then consider balloon dilation with an experienced gastroenterologist during colonoscopy.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
December 2018
Q: I am 73 years old. I was diagnosed with Crohn's in 1998 and the doctor first put me on Pentasa, which works great, in fact, it put me in remission for years. However, about a year ago, the bleeding started again and so the doctor put me on Humira, which works at first but came back, then prednisone, came back, back on Humira, came back. Now the doctor wants to put me on Entyvio. I am very scared as the side effects is too much for me to bear. What are the risk of this medication?
A: All medications used to treat Crohn’s have potential side effects. We have to measure these side effects and compare them with the risk of untreated or undertreated Crohn’s. Potential complications from Crohn’s include stricture formation, fistulas (abnormal connections from the bowel to bowel , skin or other organs) and abscess formation. The risks of Entyvio are actually potentially slightly lower than Humira, given its more gut-specific mechanism.
ANSWERED BY:
Mark Mattar, MD
Quality Improvement Officer for the Division of Gastroenterology
Quality Improvement Officer for the Division of Gastroenterology
November 2018
Q: I have been taking Humira for 7 years with great response and no side effects. Recently I have had episodes of extreme fatigue with weak feeling and a shaky feeling the day after injection. My doctor ran a series of blood work which indicate a possible drug induced lupus. I have absolutely no other symptoms such as joint pain and such. I also take Synthroid 25 mcg and have for years. This level is checked every 6 months. Would switching to another medication end the lupus side effects?
A: It’s hard to know what you exactly had. Sometimes, people can have injection site reactions (the newer humira pens may be better for you), while others can be due to antibodies to humira (which you then need to switch off humira). It depends on what tests your doctors have checked, but if this has been deemed a lupus-like reaction to Humira, then you may have switch to a different therapy. The good news, however, is that you responded well to humira, then we now have lot of choices for you that you will likely also respond well.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2018
Q: Does Stelara have less cancer potential than other biological as a treatment for Crohns?
A: Keep in mind that people with IBD are at increased risk for cancers, esp if their disease is not under control, so it’s often difficult to know based on the clinical trials whether a person got cancer because they were at higher risk for getting cancer vs whether the actual drug caused cancer. As a whole, we have data on all of the biologics, and none of them have been associated with increased cancers. This includes stelara, where we have not seen any increased risks of cancer.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
November 2018
Q: I was diagnosed 6 yrs ago with UC. It was a mild case. I took Lialda/Mesalamine, and it did the trick. I stopped taking it 6 months ago. A month ago, I had a mild flare up. My doctor wants to put me on Prednisone to bring down inflammation. I do not think my symptoms are bad enough for a steroid. If I take nothing, will the inflammation go down on its own? Is there a natural way to bring down the inflammation? Ginseng or Tumeric perhaps?
A: You probably don’t need prednisone if the flare is mild. We usually give people prednisone to make them feel better and to shorten time of suffering. Similarly, I think that mesalamine is a very good drug for mild disease. Tumeric has been studied as well, but I think that mesalamine is more effective. You can also probably tough this out, but you run the risk of it getting worse. Plus, you are almost guaranteed to extend your period of suffering. Don’t suffer. Take the mesalamine.
ANSWERED BY:
Eugene Yen, MD
Research Associate Professor, Gastroenterologist
Research Associate Professor, Gastroenterologist
September 2018
Q: My daughter was diagnosed with UC 20 years ago. After trying many meds she finally was able to get into remission using Remicade every 2 months. She has been doing these infusions for 10 years with no flares. She is now considering getting pregnant. Can she continue to use Remicade during pregnancy? Can she also breastfeeding?
A: Great question – absolutely, we recommend continuing with the infusions throughout all three trimesters of pregnancy as the priority is to keep your daughter (the mother) in the best health possible to insure a safe and health pregnancy. Infliximab, and all the anti-TNFs, are safe to continue throughout pregnancy and safe to use during breastfeed as very little is passed into the breastmilk. Because these agents are proteins, any tiny amount ingested by the baby will likely be degraded by digestive enzymes. While most of the agents cross the placenta and can be present in the baby’s bloodstream at birth, there have so far been no increased safety signals in terms of infections, developmental delays, or growth retardation. We know this thanks to the PIANO registry, a multicenter prospective pregnancy outcomes registry run by Dr. Uma Mahadevan of UCSF and funded through the Crohn’s and Colitis Foundation. It’s important to discuss family planning with your provider and a high-risk obstetrician familiar with IBD.
Moderated Note Added: To learn more about the PIANO Registry email info@crohnscolitisfoundation.org or view program transcript at: http://www.slideshare.net/CrohnsColitis/facebook-chat-120-pregnancy-in-ibd-and-neonatal-outcomes
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: Are there any medical risk or downside of doing an endoscopy and colonoscopy at the same time?
A: There is no such thing as a “risk-free” procedure, however, routine diagnostic endoscopy and colonoscopy are relatively low risk in the scope (pun intended ) of procedures gastroenterologists perform. If your provider recommends getting both procedures for a clinically appropriate indication, then getting both at the same time avoids another round of sedation in the future. An upper endoscopy does not require any bowel prep and typically only adds 10-15 minutes more of procedure time. We routinely perform both procedures together if warranted.
Moderator Note added: To learn more about diagnostic test download the brochure Diagnosing and Monitoring IBD http://www.crohnscolitisfoundation.org/assets/pdfs/diagnosing-monitoring-ibd-brochure-final-rev062518.pdf
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: I have CD for 15 yrs. and have had 4 resections. I have a protrusion that sticks out in my stomach area. My doctor says it is not a hernia. What tests are needed to find out what is going on? Is a protrusion in the stomach area a common experience with CD?
A: The most common cause would be a hernia from a prior incision site, but that’s usually evident on physical exam particularly if it bulges out as you move from laying down on your back to sitting, for example. Most hernias don’t require intervention, they also may or may not be seen on imaging studies depending on size and location. If it’s not a hernia, then I would ask your provider about other possibilities. Concerning features would be increasing size, pain, warmth to touch, redness, fixed position – not mobile.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
September 2018
Q: I was diagnosed with UC in 2001 and started on Remicade. I am currently on Entyvio. Two years ago I had a routine colonoscopy and biopsies that showed low grade dysplasia. The dr. was able to successfully remove the dysplasia during another colonoscopy under anesthesia. I had another colonoscopy and I can say that I am in remission. No signs of any UC inflammation. However, biopsies again showed signs of low grade dysplasia. What other treatment alternatives are available?
A: There is no “treatment” for dysplasia, per se. The goal is to try to remove the dysplasia if identified. Risk factors for dysplasia are extent of UC (does it involve more than just the rectum), duration of UC diagnosis (we often recommend surveillance colonoscopies to try to detect dysplasia after 8+ years of diagnosis or sooner if there are higher risk factors such as family history or a liver condition such as primary sclerosing cholangitis or personal history of dysplasia), ongoing inflammation and increasing age. The good news is that your UC is well-controlled. However, you have scopes that show dysplasia – the priority is to try to insure we see and remove the dysplasia as best as possible. I would discuss with your provider using an enhanced imaging technique such as chromoendoscopy to try to identify areas of dysplasia and fully remove them if possible. Sometimes, interventional endoscopists are needed to help with these procedures.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
July 2018
Q: What happens if you have a positive TB blood test during treatment with a biologic?
A: Current recommendations would be to have close follow-up evaluation including chest imaging and referral to see infectious disease specialist. Your provider will likely notify you to hold your biologic therapy until confirmation testing is completed.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
January 2018
Q: I am switching to Humira from Remicade due to infusion reaction. What dose and timing of oral prednisone do you recommend to prevent reaction to Humira?
A: That’s an interesting question. With infliximab (Remicade), some providers use steroids (like prednisone) before the infusion with the thought that it prevents infusion reactions. For adalimumab (Humira), I have found that using allergy drugs like diphenhydramine (Benadryl) can be effective in preventing injection site reactions. I have not use steroids with adalimumab in the past to prevent injection site reactions.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: My 21-year old son is on 6mp for several years with good success. He developed hives a week ago that have not gone away. He woke up with swollen hands and feet with welts around the areas. Hives have been seen on upper arms, back, knees, and they come and go. We're seeing an allergist next week. There are warnings to seek medical professional right away if hives and rashes show. He also has a cough and sore throat. Why the warning on meds and could he be allergic to 6MP now?
A: Thanks for your question. Several medications can cause hives. However, it would be unusual that your son having being on 6-MP for several years would then go on to develop hives. It was completely appropriate to seek out a health care professional for the symptoms, but since there are multiple causes of hives besides medication, it may be best to await the work-up before attributing the symptoms to 6-MP.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I was diagnosed with CD in 2014 at age 60. I have been on Pentasa and did ok. I had a flare in mid-2017 and was changed to budesonide after colonoscopy showed moderate inflammation and small ulcers. The budesonide has not helped and now my Gastroenterologist wants to start Imuran or Remicade. I have read about both and wonder which is really better for CD. I can't find any clinical trial data/studies on Imuran in CD and am concerned about its use in CD. Which drug is the better choice?
A: This is a great question. When it’s time to advance medical therapy to medications like azathioprine (Imuran) and infliximab (Remicade), there are multiple considerations. There is data that both medications are effective in CD. The better choice is going to depend on the specific patient. Azathioprine takes 2-3 months to generally kick in and is an oral medication taken daily while infliximab can kick in after 2-4 weeks but is given as an IV in set intervals. It will be best to discuss the best choice with your gastroenterologist.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2018
Q: I am a 20 year old male who was diagnosed with ulcerative colitis in 2014. I am taking Asacol HD (600mg) with my Azathioprine daily. The Azathioprine is working very well for me and I haven't had a flare up since I started 2 months ago. However I have been told that this drug can increase the chance of cancer. I wanted to ask what percentage of people taking this medication actually get cancer and of what age group? Should I be worried about taking this medication?
A: This is a very common question. The two most common types of cancer associated with azathioprine are: 1) nonmelanoma skin cancer, and 2) non-Hodgkin’s lymphoma. The risk of skin cancer is about twice that of those individuals with ulcerative colitis who are not on azathioprine. This risk goes away once the medication is no longer being used. Non-Hodgkin’s lymphoma is much less common, and is about four times as likely with azathioprine than without it. However, this risk still equates to about 1 in 1000 after years of taking the medication. Again, once the medication is no longer used, the risk appears to go away. For both types of cancers, older patients (>60 years old) have the highest risk.
Having said this, we also have to weigh the risks of any medications against the risks of having uncontrolled ulcerative colitis like surgery and colon cancer. I’m glad to hear your disease is under control.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
December 2017
Q: My adult daughter was diagnosed with CD in 2013 and started Remicade in 2015. For the past 6 infusions she has had an allergic reaction during the infusion. She is given a steroid than the infusion starts again with no problems. She isn't presently having any flare-up symptoms. Does this mean she should stop Remicade? She is also on methotrexate, but has no relief for RA symptoms, which are getting worse. Do you have any suggestions on meds for both Crohn’s and RA?
A: Allergic reactions can occur during the Remicade infusions. Because your daughter has required steroids during the last several infusions, she may want to try pre-treatment with a dose of an anti-histamine, such as Benadryl, and a dose of steroids before the infusion in order to prevent a reaction. Slowing the infusion rate sometimes can also be helpful.
Methotrexate is often useful for both Crohn’s and arthritis. Your daughter may want to discuss whether the current dose of methotrexate can be adjusted to better control her joint pains. Alternatively, her doctor may want to do some testing to make sure that her intestines are healed, because ongoing intestinal inflammation can also be a cause of ongoing joint pains. Alternatively, her doctor may want to do some testing to make sure that her intestines are healed, because ongoing intestinal inflammation can also be a cause of ongoing joint pains.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: I am on Remicade and MTX. The side effects are very hard to live with. I feel tired, often dizzy, run down, and weak. I take the MTX on Sunday night via injection. If I was not semi-retired, I would be in trouble because I could not work Monday or Tuesday each week. Is there a point where the healing is sufficient that I can get off this stuff? Is there healing going on at all? My quality of life was better when I was going to the bathroom all the time
A: If you think that the symptoms of fatigue, dizziness, and weakness may be due to the methotrexate, I recommend discussing possibly stopping the medication with your doctor. Methotrexate is often used to prevent antibody formation to Remicade, and your doctor can advise you whether you may be able to try Remicade on its own, or possibly with an immunosuppressant from a different class of medications that may not cause the same problems for you.
However, you also make a very good point that it is important to find out if your intestine is healing on your current medication regimen. Some of your symptoms, such as fatigue, could also be caused by ongoing inflammation. Your doctor may do testing include a stool test for calprotecin (a marker of inflammation), a colonoscopy, or a MRI or CT scan to help determine if the intestine has healed.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: My husband with Crohn's is moving to Humira or another biologic. The problem is he keeps running into issues with the TB blood test coming up indeterminate, and although a follow up CT scan revealed no issue, he is being referred to an infectious disease specialist because they are worried about latent TB. How likely is it that my husband actually has latent TB, or is it showing up indeterminate because of his immunosuppressant? What are his treatment options if he does have latent TB?
A: It is very important that your husband has been tested for TB prior to starting a biologic, since if TB were present and inactive, it could become re-activated on biologic medications. You are correct that your husband’s TB test may be resulting as “indeterminate” because of his immunosuppressant. Going to the infectious disease specialist seems like a good way to be sure. If the doctor does find evidence of latent TB, then anti-bacterial medications to treat the latent infection, such as Isoniazid, may be prescribed. Once the treatment for latent TB has been started, patients are able to proceed with their biologic treatment for Crohn’s.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: I had resection surgery for Crohn’s disease 3 years ago. I had a scope several months after surgery that showed ulcers at the anastomosis site. My recent scope showed that the number of ulcers has increased but my doctor does not consider it a recurrence. I have started to have GI symptoms. Is this typical to have an increase in ulcers and symptoms? I am worried it is a flare-up. How can doctors tell if this is a flare up or recurrence? I am currently on Entocort and no other IBD medication.
A: I would consider your GI symptoms along with colonoscopy findings showing ulcers as indications that your Crohn’s is active (you could call that either a flare or recurrence, I think both are the same in this case). Entocort (budesonide) is a steroid, and should only be used as a short term treatment to induce remission. It should not be used long term to maintain remission. It sounds like you should discuss starting a more long term medication to treat your Crohn’s with your doctor, either an immunosuppressant or biologic. I think it is important to do this soon so that your disease does not continue to progress---we do not want you to need another surgery down the line.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: I had my first Remicade infusion two weeks ago and been off steroids for a week. Is this normal to continue to have really bad pain? The day after the infusion my pain increased. Is my treatment not working or does it take a long time for it to work?
A: Remicade has 3 “loading doses” during which time you are getting to the right level of drug in your system. The drug is dosed at week 0, 2, and 6 initially. Sometimes patients will need a longer period of overlap with steroids and Remicade in order to give the Remicade more of a chance to work. Or, sometimes your doctor may need to adjust the amount of Remicade you are given during the infusion. Also, it will be important to work with your doctor to find out why the pain is occurring—if it is due to the active inflammation in the intestine, a narrow area, scar tissue, or maybe something else. Not all pain is caused by active inflammation, so it is important to know why it is happening so that the correct treatment can be chosen.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: My daughter has had Crohn’s disease for 6 years. Three months ago she developed an anal stricture and has had 2 colonoscopies and dilatations. Is this stretching only achieved by full colonoscopy? The prep is so hard for her to keep down. She currently takes Imuran, Apriso and Entocort but is flaring more and the doctor has recommended a biologic. How are the options for choosing a biologic usually compared? Remicade vs. Stelara vs. Humira etc?
A: Stretching of an anal stricture can sometimes be done via flexible sigmoidoscopy (a short scope into the bottom of the colon). However, some sort of bowel prep would likely be necessary. There are several different options of bowel preps, so perhaps your daughter can work with her doctor to find one that is easier for her to tolerate.
In terms of her medication regimen, it sounds like changing medications would be a good idea. Entocort (budesonide) is a steroid medication, and should only be used for a short time to help induce remission, but should not be used as a long term maintenance medication. Also, it is targeted to the end of the small intestine (terminal ileum) and right side of the colon, and is likely not helping the anal stricture area. Apriso is FDA approved for mild to moderate ulcerative colitis, and is likely not effective for Crohn’s disease that is causing strictures. Biologic medications such as the ones you have mentioned are effective for moderate to severe Crohn’s that has failed to respond to other medications. Remicade and Humira are both antibodies directed again TNFa, one part of the overactive immune response that is attacking the intestine. Remicade is given as IV infusions, 3 times in the first 6 weeks, and then every weeks. Humira is a shot every 2 weeks. Stelara is an antibody against two chemicals involved in the immune response, IL-12 and IL-23. It is given as a one time IV infusion, and then a shot every 8 weeks. All are effective, and your daughter’s doctor may be best able to discuss the risks and benefits in her particular situation.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2017
Q: I am 20 yrs old and was diagnosed with UC in 2009. I was on the anti-depressants celexa and amitriptyline to help with my depression. I came off of the antidepressants three months ago. Since coming of the antidepressants my depression, anxiety and colitis all got worse. Are there better antidepressants that can help control my diarrhea and inflammation. I currently take protonix, and welchol.
A: Treatment of depression and anxiety are very important parts of your care, and very important parts of your overall well-being. However, anti-depressants cannot control the inflammation caused by your UC. Amitriptyline may have helped slow the diarrhea, but again it was not treating the underlying immune over-activation that is causing inflammation in your colon. In addition to treating the anxiety and depression, it is also important that you get on effective medication to treat your UC. From the medications listed, it does not appear that you are currently on any UC therapy, and it will be important to work with your gastroenterologist to find an effective therapy for your to control the inflammation, and, in turn the diarrhea.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
October 2017
Q: If a patient has been on Azathioprine and balsalazide for 15+ years. What blood tests should be performed for routine monitoring? My husband's GI has been just doing a CBC, but as a result of his yearly physical lab report (with family practice dr.), we learned he has liver impairment. Are regular liver tests standard if you take Azathioprine? Should I be concerned about the level of care he's receiving from his current GI doctor?
A: Thanks for the question – monitoring while on medications is important as we can sometimes pick up on subtle changes and act on them before they become a problem. Balsalazide is generally a very safe and well tolerated medication and doesn’t require strict monitoring like some of the other medications. We do recommend checking kidney function through bloodwork at least every year with something called a metabolic panel or profile. This is because there is a rare condition called acute interstitial nephritis associated with this class of medications – I have to emphasize that this is really uncommon, but it’s simple enough to check kidney function annually with blood work, especially if you are taking other medications that can affect the kidneys or have conditions affecting the kidneys (but you are probably already being monitored for that already.
With respect to azathioprine, we do recommend getting routine bloodwork – depending on how long and how stable the dosing regimen has been, it can be every 3-6 months. In my practice, I check a CBC (complete blood count) to monitor the White blood cell count number, which can occasionally be low while on the medicine; the Hemoglobin/Hematocrit (which helps us look for anemia), and the platelets which are a subtle and non-specific marker of inflammation. I also check what’s called a complete metabolic profile to check kidney and liver tests, azathioprine can sometimes increase the liver numbers, so we monitor that as well. Also, we recommend at least annual skin exams while on azathioprine, sun protection and to reapply given the association with an increased risk of skin cancer.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: I'm 25, have Crohn's Disease, and am currently regulating it with diet as I didn't respond well with the different medications. I get sores in my mouth during flare ups, but this time is the worst I have ever experienced. I have sores all along my jaw and cheek inside mouth causing a pretty swollen cheek. It's been like that for almost 2 weeks now. Any suggestions on what to put on the sores or how to get inflammation in cheek to go down?
A: My first thought when reading this is that you may have active Crohn’s disease as oral aphthous ulcers tend to be present during active disease. The first thing I would recommend is to get an evaluation of your disease activity. In terms of addressing the symptoms, mouthwashes or rinses that contain steroids and analgesics such as viscous lidocaine are temporizing measures but treatment of the underlying issue is the key. If there isn’t active Crohn’s disease, other causes can be vitamin/mineral deficiencies – zinc, iron, b12, etc, or viral infections or other autoimmune conditions such as Behcet’s disease. However – I suspect that your Crohn’s disease isn’t as well controlled as it should be and would recommend an evaluation, particularly if you are this symptomatic.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
October 2017
Q: My son has Crohn's and was on Remicade+MTX from past 5 years. He started with flare-up recently but his Remicade blood levels were normal with no antibodies detected? What does this mean? His blood tests and endoscope showed elevated Eosinophils. Colonoscopy showed inflammation in colon. Does it mean the Remicade became ineffective even with no antibodies? Or could it be due to any other infections or food allergies?
A: It depends on how “normal” the levels are – during active disease, sometime patients require higher dosing and adjustments to still keep them therapeutic. For example, therapeutic is a value > 5, but if someone is symptomatic with a level of 6, they may do better with higher dosing or shortened intervals. If the levels are an acceptable level and there is active disease, then this means that he likely lost response to Remicade/MTX combination – meaning, in simple terms, that his Crohn’s disease outsmarted the medications and he would potentially be better with a medication that works in a different mechanism of action such as vedolizumab (Entyvio) or ustekinumab (Stelara). However, discuss this with your gastroenterologist first.
ANSWERED BY:
Christina Ha, MD
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
Director of the Inflammatory Bowel Disease fellowship at Cedars-Sinai Medical Center, Associate Professor
August 2017
Q: I was recently prescribed 1g Asacol foam enema. I was on the Salafolk ones for about a week
but I was told it was the same stuff so didn’t really worry. I’ve been having a tougher time with
these Asacol ones. I just can’t seem to hold them in as long, some nights they seem to come
out right away. My usual time of holding them in at the moment is about an hour before I need
to go. Is this enough time for the medicine to work?
A: Typically the foam based formulation is easier to hold than the liquid formulation. It should get better the longer you are on therapy. If it is not improving, I would discuss with your physician about a change of the formulation back to the liquid if that was easier to hold.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2017
Q: I’ve looked at the drug profile for ulinastatin and it seems as though it would be a good fit to treat severe, refractory Crohn's disease. It may also stave off fibro stenosis for those with a stricturing phenotype administered post-op following resection. I wonder why more studies haven't been conducted? What are your thoughts on this as a treatment option?
A: This is not a therapy I had heard of until this question. I was able to find a few in vitro studies, but no clinical trials are currently being conducted.
I have passed this along to our clinical trial team as they may have more information. I am sorry I don't have more information for you.
http://onlinelibrary.wiley.com/doi/10.1111/j.1744-9987.2011.00967.x/full#references
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2017
Q: I was diagnosed with Colitis last year. I was first prescribed Pentasa and now Mezavant both started to work for 3 months but not anymore. While on both medications I found sex painful. I went to see a Gynecologist who told me that there was a lump on the left side where I felt the most discomfort. Could my colon be inflamed? I'm lost as to what doctor to see and what my options might be.
A: If your gynecologist felt a lump they should have followed this up with an ultrasound. It is possible that your colon is inflamed making intercourse painful.
I would follow-up with your gynecologist and your gastroenterologist to ensure that you have healing on these medications.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2017
Q: I was diagnosed with CD 10 years ago at age 26. The disease is classified as mild to moderate to date. I have managed it with only two antibiotic courses as treatment. My doctor wants me to treat the disease when most days I don’t think my symptoms warrant treatment. In addition the treatments risks don't seem to outweigh the benefits for me. How do you make the decision what treatments are better than the disease itself and which treatments are best for mild to moderate case of Crohns?
A: Mild to moderate Crohn's disease should be treated. As even when you don't have symptoms you likely have ongoing inflammation what we call "subclinical" inflammation.
If your disease mild to moderate depending on the location of the disease and whether you have any stricturing or abscess/fistula there are multiple medications that can be recommended. You should follow-up with your gastroenterologist to discuss treatment options. Untreated disease overtime can require surgery, medications prevent surgery and progression of disease including colon cancer related to Crohn's disease in the colon.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2017
Q: I have not had a bowl movement in almost a week. Can this be a problem associated with Crohn’s Disease? What should I do?
A: Constipation can be associated with Crohn's disease. However this type of problem should be evaluated with your provider.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
August 2017
Q: I've been on sulfasalazine for 22 years with no problems. My uc has never been severe as far as my symptoms. At 62 years old, I'd like to stay on sulfasalazine. After my recent colonoscopy my GI wants to try Entyvio. I'm very reluctant and can't figure out why. My former GI retired and this is a young new GI. Not doubting his experience but I'm leaning toward staying with sulfasalazine. Are there any long term side effects of sulfasalazine that would justify my GI changing to Entyvio.
A: Since your diagnosis we have changed the way we manage disease. While sulfasalazine is a very effective therapy to manage ulcerative colitis, I assume that your new provider found active inflammation on your colonoscopy (despite you feeling well), we call this subclinical disease. Currently our goals are to treat to mucosal healing which means you feel well and your colon looks healthy. Entyvio is a safe therapy that only impacts the immune system in the gut. If your provider is recommending escalation of therapy it is likely due to the fact you have ongoing inflammation in your colon. I would address your concerns about the new therapy with your new provider or seek a 2nd opinion.
ANSWERED BY:
Jami Kinnucan, MD
Assistant Professor
Assistant Professor
July 2017
Q: I am 40 years old and have had ulcerative colitis for 30 yrs. I've been on 5ASAs most of the time with Prednisone to help on the occasional flare-up (once every few years). Recently flare ups have been coming back more often (2 flare ups in the last 9 months) and my doctor wants me to change to a stronger medication. He has suggested either 6MP or Humira. Does one work better in terms of response, safety and side effect? How do I choose one over the other?
A: Great question.
The side effect profile and safety issues for 6-MP and Humira are actually very similar. 6-MP is typically started with prednisone because it takes 2-3 months to work. Humira usually starts working in 4-6 weeks and may require a shorter course of prednisone before it kicks in. As far as which agent is more effective, this may vary from patient to patient. In general, Humira appears to be more effective. The choice of one over the other really depends on multiple factors including choosing between injections vs. pills, the labs sent prior to starting these therapies, and insurance coverage.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
July 2017
Q: I have had a rash around my mouth and now has moved around my eyes for about 9 months now. The doctors thinks it is perioral dermatitis, but they aren't sure? I have been on remicade for about two years and currently on prednisone to reduce lip swelling and the rash goes away. The rash comes right back after I’m off the prednisone. How can this condition best be treated?
A: Thanks for your question.
I would see your primary care doctor and perhaps a dermatologist as the rash could represent other diseases apart from inflammatory bowel disease. After you obtain a more formal diagnosis of the rash, a better treatment regimen may be recommended. Staying on prednisone for the rash is not the ideal treatment strategy.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
March 2017
Q: I have severe ulcerative colitis of the entire large colon. Is it safe to use prednisone 20 mg daily, lialda (mesalamine) 2.4 gm 2x daily and sulfasalazine 1,000 mg 3x daily together? I'm worried about taking so much medication.
A: The goal in the treatment of patients with IBD is to use steroid sparing medications as much as possible. If you have been on steroids long term, escalation of your therapy should be considered. It is not unusual for patients to be on both steroids and mesalamines while trying to get in control and this is safe. I typically do not have patients both on lialda and sulfasalazine but your provider may have reason for this – perhaps joint pain. Currently there should be no safety issue in the combination that you are currently presently taking.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
March 2017
Q: I am 28 years old and was diagnosed with UC in May 2016 (first flare). I had a second flare in Sept 2016. I was hospitalized both times. I am now on 5 mg of prednisone (every 3 days) and salazopyrin (3mg pd). I feel that a flare might come again. I feel tired and have gas. This potential 3rd one comes 4 months after the last one. Which is exactly the same amount of time between the first two. How can I manage my disease proactively?
A: Given two hospitalizations in a year, I think you should discuss with your provider considering escalation of therapy – proactively your provider can check blood and stool tests to see if there is any active inflammation, a repeat endoscopic evaluation could be in order as well. The goal is that you get off steroids to avoid long term complications of these medications and that your disease be more deeply controlled. Many patients also monitor their symptoms closely by journaling or using apps such as GI Buddy – and this can give helpful information to your provider.
ANSWERED BY:
Emmanuelle Williams, MD
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
Associate Dean for Student Affairs, Penn State College of Medicine, Associate Professor, Department of Medicine, Director of Inflammatory Bowel Diseases, Division of Gastroenterology and Hepatology
January 2017
Q: I'm female with acute CD in the terminal ileum. I was on Remicade for 8 years with great success, but am now in the midst of my first flare-up. The doctors tell me that I have an abscess, a developing fistula, and a pretty severe stricture in the ileum (which is my big problem area). I'm currently on antibiotics for the abscess, TPN, and a clear liquid diet. My doctor wants me to have surgery, but I want other options to consider first. What are some other possible treatment options?
A: When an abscess develops, this indicates that the Crohn’s inflammation has burrowed all the way through the intestine wall, and has actually made a hole in the intestine wall. The little hole in the intestine allows the contents of the intestine to leak out into your abdomen, and you body defends itself by walling off the area and creating an abscess. Surgery is required to fix that hole in the intestine wall, because medicines are not able to do that.
ANSWERED BY:
Sushila Dalal, MD
Assistant Professor of Medicine
Assistant Professor of Medicine
December 2016
Q: I had a right hemicolectomy in June 2015 with removal of the ileocecal valve. I have had constant severe diarrhea since that time. I have tried many medications with no success. Any suggestions?
A: The ileocecal valve is an anatomic landmark that connects the ileum (small intestine) and colon (large intestine). Unfortunately, many questions concerning its function and structure remain unanswered. We do know that the intestinal contents pass from the ileum and into colon through this valve, and the passage is controlled by chemicals in the blood stream and nerves supplying the intestine. Furthermore, the valve may help maintain a difference in the bacteria found in the colon compared to the ileum.
Most patients who have their ileocecal valve removed do not experience any long-term change in their bowel habits. The frequent or loose stools (diarrhea) that do occur in others can result from multiple causes that must be sorted to determine the best treatment. If a large amount of the ileum has been removed with the ileocecal valve, the body is unable to manage fat in the diet, and the resultant diarrhea (steatorrhea) tends to be associated with oily stools that may float and are particularly foul-smelling. In this instance, a medication (cholestyramine) taken at mealtime can improve the diarrhea. In other patients, the diarrhea occurs because of colon bacteria now residing in the ileum (small intestine bacterial overgrowth). This overgrowth can also cause bloating and pain, and is usually managed with antibiotics taken for 1-2 weeks, but repeated courses may be required. Lastly, the diarrhea can result from the intestinal contents passing too quickly along the length of the bowel. Anti-diarrheal agents (diphenoxylate plus atropine, loperamide) can slow this passage to decrease the frequency of the stool. Moreover, over-the-counter fiber products may help increase the stool’s consistency.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2016
Q: I had surgery in 2000. I had my colon removed and had a "j" pouch to avoid an ileostomy. I have developed a skin irritation that will not heal because of the frequency of bathroom use. It is extremely painful and I am requiring prescription pain killers. Is there any information on ways to help the skin heal?
A: Irritation of the skin around the anal area (perineum) caused by frequent stools (diarrhea) or poor control (incontinence) is caused by many factors working together. Frequent cleansing causes damage from abrasions and alters the skin’s protective acid content (pH). Excessive moisture further alters the skin’s pH, which increases its porousness (permeability). In addition to the local inflammation caused by cleansing and moisture, infection may develop as germs contained in the stool can penetrate the traumatized and porous skin.
Management of the perineal skin damage requires local measures as well as identification and treatment of the underlying cause. Perineal skin cleansing should be performed after each stool or incontinent episode. Specific cleansers are available in many forms (emulsion, foam, liquid, towelette). Bar soaps, skin cleansing agents, and antibacterial hand-washing products can worsen the problem.
The affected skin needs to be moisturized to reinstate the depleted factors. Humectants (glycerin, lanolin, methyl glucose esters, mineral oil) contained in perineal cleansers replace the skin’s natural oils. No-rinse perineal cleansers with humectants minimize drying because they remain on the skin rather than being rinsed away. Moisture barriers (protectants) contain active ingredients (dimethicone, lanolin, petroleum jelly, zinc oxide) to shield the skin from exposure to irritants and moisture. A moisture barrier may be incorporated into skin cleansers or separately applied as a cream, ointment, or paste. Ointments and pastes are longer lasting and more occlusive.
Liquid barrier films or skin sealants combine a solvent that evaporates and a polymer that dries to form a barrier when applied. Some solvents may irritate the damaged skin, and any product should be accordingly used only if not associated with stinging during application. A liquid film barrier should not be combined with a moisture barrier because these agents are typically incompatib
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2016
Q: What are the pain management options? NSAIDs are out for obvious reasons. Tylenol only takes edge off. Narcotics have their own list of problems including but not limited to addiction. I've asked for an antispasmodic to hopefully reduce spasms/pain. But this is a last ditch effort on my behalf to control my chronic pain. I'd love to hear any other suggestions.
A: The more chronic the pain, the more it involves the brain. What I mean is that the brain re-organizes if constantly bombarded by pain signals and neighboring brain regions that process emotions (anxiety, depression) and thoughts can also be affected.
Most research supports learning coping skills to reduce these negative emotions or negative or pessimistic thinking as the best way to reduce pain perception. You are correct narcotics have many side effects and have been associated with greater risk of infections and death in patients with Crohn’s disease. There are non-opioid pain medications that have evidence in helping pain – working both on the nerves and in the brain. Finding a pain doctor or psychiatrist who specialized in chronic pain can help you find specific options.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
October 2016
Q: I would like to know more about extraintestinal / non-gut pain relief. Joint pain seems to be a big problem for me, even when the Crohn's is mostly in remission. Tylenol has been the only thing I can take without unpleasant side effects. What natural pain relief options are out there? Also, where is the research on this today? Has there been any progress?
A: First for any type of pain, you want to check with your gastroenterologist to make sure that it is not due to inflammation and other medical causes. The most natural pain relief options are those that do not use medications- brain techniques such as relaxation, meditation and increasing enjoyable activity. For natural pain options, omega 3 fatty acids have been studied but best to check with your doctor.
ANSWERED BY:
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
September 2016
Q: My GI doctor has recently suggested a new treatment for my Crohn's disease. He has suggested the medication Entyvio. I haven't heard much about the medication, and before committing I'm trying to gather information about medication.
A: It’s always a good idea to gather information on a new medication that is being recommended. Entyvio is a biologic medication that binds a gut-specific protein that is important in causing inflammation. It is given as an intravenously (IV) infusion, a little more initially to induce remission, and then usually every 8 weeks for maintenance. Its safety profile so far seems to be better than the anti-TNF agents like Remicade and Humira. However, it looks like it can take longer to start working than those medications. I would speak to your provider for further details.
You can also obtain more information on Entyvio from http://www.ccfa.org/resources/biologic-therapies.html.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I’ve been taking Pentasa since being diagnosed with CD in 2003. I initially started out at 4 pills 4 times a day at 500mg a pill. My symptoms have been well controlled since. The past 2 years I w/Dr have changed my dosage to 4 pills once a day still 500mg. In the past 2 years my big toe nails have both become discolored and infected. Just recently I have noted getting the tingles/numbness in my arms and legs at times. Could I be having medication withdraw? Or is it just a coincidence?
A: Peripheral neuropathy has been rarely associated with mesalamine products like Pentasa. I don’t know if the discoloration and infection of your toe is related to the Pentasa though. I would check with your provider and ensure that other causes of tingling/numbness in your extremities, especially if these are a persistent symptom, are ruled out.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
September 2016
Q: I've been taking Pentasa for 23 years. First, 4 pills @ 250 mg twice a day and the last couple of months 2 pills @ 250 3 times a day. In both situations I feel the medicine after 23 years has been the cause of my sinus/nasal issues and makes it hard to breathe. I also have a general unwell feeling. Is it possible to build an intolerance to this medicine after 23 years? Prior to Pentasa I took Azulfadine for many years and could no longer take it. What are some other treatment options?
A: Sinus/nasal problems would be an unusual effect of a medication like Pentasa. Things like sinusitis (inflammation of sinus tracts) has been reported with medications like Pentasa in large studies but it is uncommon.
If you have generally been feeling unwell, from an IBD standpoint, it may be important to ensure that your disease is controlled. Often your symptoms don’t correlate with active intestinal inflammation so it is important that labs, imaging, and/or colonoscopy are performed to obtain an objective assessment of the disease. If you do have active intestinal inflammation, there are several treatment options based on the degree of disease severity that you can discuss with your provider.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
April 2016
Q: I've had UC for 30 plus years and have recently been diagnosed with a rectovaginal fistula at the dentate line. It has been recommended that an abdominal proctocolectomy with an end ileostomy be performed due to the fact that the fistula will be at the level of the cuff if any pouch is made. Does this require an open surgery and is there any way that a pouch or IPAA can be successful?
A: A rectovaginal fistula is a communication between the rectum and the vagina. Most are due to obstetric injuries. Other causes include irradiation, malignancy, congenital malformations, and inflammatory bowel disease. Rectovaginal fistulas are uncommon complications of chronic ulcerative colitis, and are more often associated with Crohn’s Disease. Many are asymptomatic and found incidentally. If the fistula is symptomatic, methods of treatment such as excision and primary layered repair, fistula plug placement, endorectal mucosal advancement flap can be performed. Success rates range from 50-95%. Rectovaginal fistulas associated with Inflammatory Bowel Disease have lower success rates.
Having UC for 30+ years places a person at risk for the development of dysplasia and malignancy. Surveillance colonoscopies are done annually to identify these changes. If high grade dysplasia or malignancy is found, a total procto-colectomy with either end ileostomy or construction of an ileal pouch-anal anastomosis is performed. These procedures are also done for medically refractory cases of ulcerative colitis. Removal of the entire colon and rectum with creation of an end ileostomy is usually performed if the patient has poor anal sphincter function and incontinence is an issue. The total procto-colectomy with ileal pouch-anal anastomosis or “J-pouch” procedure restores near-normal bowel function by creating a neorectum from the terminal ileum. A mucosectomy (stripping the mucosa of the anal canal to the dentate line) with a hand-sewn pouch-anal anastomosis can be performed. Mucosectomy is often associated with injury to the anal sphincters, and impaired fecal continence may be a problem post-operatively. A diverting loop ileostomy is usually performed to allow the anastomosis to heal, and the ileostomy reversed 8-12 weeks later. The operation can be done via an open or a laparoscopic approach. A pouch procedure may be an option for you.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2015
Q: Are there specific tests that identify TNF as the source of active ulcerative colitis inflammation, or are biologics just automatically tried if immunomodulator doesn't induce remission? I have mild to moderate kidney dysfunction and a family history of lupus. The prospect of starting Humira scares me, especially since I work in a public setting where exposure to infection is constant.
A: In clinical practice, there are not TNF tests available. Because of studies showing that a significant percent of people with ulcerative colitis have a good response (and a higher percent than respond to immunomodulators), they are frequently used when immunomodulators are not helping. All of these medications do carry risks that should be considered, but often the benefit of controlling difficult to manage ulcerative colitis outweighs those benefits.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: My son with Crohn's is on Remicade. He is in college and trying to arrange a semester abroad in Tokyo, Japan. How can we find out if Remicade is even available in Japan? We have tried speaking to pharmaceutical company that makes the medication but to no avail.
A: Remicade is available in Japan. It would require careful planning, but travel abroad can be accomplished successfully. Your son would need to quickly establish care with a GI provider in Japan who would be able to provide the Remicade while he is abroad. His care provider here may be able to help find a hospital or provider that would be appropriate.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I have Crohn’s. I am also taking chemotherapy for uterine cancer and it causes severe diarrhea. I plan to take a combination of Questran (cholestrymine ) and Imodium during the next round of chemo. Lomotil no longer works for me. What other diarrhea control products are available?
A: Diarrhea due to chemotherapy can be challenging to manage, especially when you also have Crohn’s disease. Your plan of Immodium and cholestyramine sounds like a good next step. There is a stronger medication that can help to slow diarrhea, but it is a narcotic medication. If the maximum doses of Immodium and cholestyramine are not effective, you would need to talk to your care providers about the downsides of other options and whether it would be appropriate to try a stronger medication during this time.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I have severe Crohn's. I am on Pentasa 4,000mg/day, Purinethol 50mg/day, Prednisone 20mg/day and just had my 3rd Remicade infusion and I am seeing no relief. I am very concerned about the Remicade and Purinethol treatments as I am seeing no benefits. I am also experiencing side effects from the Remicade that concern me. After each treatment I experience confusion, a drastic drop in blood pressure, trouble focusing the eyes and flushing in the face, should this treatment be discontinued?
A: It sounds like you are really struggling to get your Crohn’s disease under control. I would recommend that you meet with your doctor to review your response to the medications and any side effects that you are having. I can not say whether the treatments should be stopped without seeing you, but your care provider should be able to provide that guidance. I try to give Remicade around 12 weeks to see if it is effective. I then use symptoms and other tests (sometimes labs, imaging, or endoscopy depending on the patient) to help make this decision.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I have CD for 21 years. I am currently on 6mp 50 daily (I cannot tolerate higher dose, it affects my liver) and 1.2 Lialda 4 daily and once again in a flare up. I have tried Humira and Remicade. I have been on prednisone many times in the past and will not go back on. I've also taken Entocort and meslamine. What are your thoughts on Ustekinumab?
A: Ustekinumab is a medication currently used for psoriasis that works by blocking inflammatory proteins called interleukins. There are early studies showing promise in the treatment of Crohn’s disease. Because it does not block TNF, it offers a new mechanism for treating Crohn’s and may be a good option for patients in whom Remicade and Humira have had no effect. It is not yet FDA approved for Crohn’s disease. On an individual basis, it might be the best next treatment for certain patients. Your care provider would need to help you make this decision and see whether insurance coverage would be possible for your individual case.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I just read that Humira has a success rate being 50-60% in mild to moderate cases of Colitis & Crohn's. What is the success rate of Remicade for severe cases of Crohn's? Given the side effects I am having I am considering going off treatment, but I am concerned as I am told that if I need to go back on it, it may not work because the body builds up antibodies against the drug.
A: In patients newly diagnosed with moderate to severe Crohn’s disease, combination therapy with Remicade plus immunomodulator has about 56% chance of steroid free remission at 26 weeks and Remicade alone has about 45% likelihood of steroid-free remission at 26 weeks. This study is not looking at patients who stopped therapy. Stopping therapy does increase the chance of anti-drug antibodies and loss of effectiveness in the future. I would recommend an honest discussion with your care provider before stopping any therapy.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
October 2015
Q: I am currently on Lialda, Canasa, 6-MP, Simponi, levsinex, VSL#3 and miralax. I’m allergic to Remicade and after a year humira didn't help anymore. My stool is mostly formed but the issue is mucous and blood leakage especially when passing gas and before each BM. I’m trying non RX such as l-glutamine and amp floracel. Are there other treatment alternative options?
A: Curcumin has had some evidence showing benefit for mild symptoms. There are other alternative therapies that you will read about on the internet, but they do not have traditional evidence showing benefit in inflammatory bowel disease. That does not mean that they don’t work, but we just do not know enough about them to be able to recommend them at this point. I always recommend keeping your provider involved so that they are aware of everything that you are taking (even supplements). In addition, it is possible that your symptoms are mostly rectal and a topical mesalamine suppository or enema could be helpful.
ANSWERED BY:
Karlee Ausk, MD
associate director of the Swedish IBD Center
associate director of the Swedish IBD Center
June 2015
Q: My 18 year old daughter just had a third major flare and is on prednisone again. We are now facing a decision about maintenance with either Humira or Remicade. Both have some serious warnings, but both seem to be discussed as being quite effective. What advantage is there one over the other for a young adult who is college bound? Would it be impractical to schedule infusions when at college or are they available at most hospitals? What are the pro/cons for either?
A: This is a common scenario. Humira and Remicade both have the same mechanism of action and in most people will have similar effects with little difference between the two. The major difference is that Humira is given as a shot (by injection or prefilled syringe) every 2 weeks while Remicade is given like an IV every 8 weeks. Remicade will require that a patient go to an infusion center for each dose. There are infusion centers in most mid-sized to large cities so it may be prudent to determine if there is one near her college. I would suggest that she establish with a gastroenterologist near her college as well
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I was diagnosed with Crohn’s disease about 8 months ago and have been on Lialda but recently have not been doing well. I have lot medication side effects. Is there another drug that is similar that may provide me with less side effects? I am still trying to understand how to control flare ups and wonder if there are any specific tips to help control the symptoms. I am working to limit my drinking and have actually just begun a gluten free diet to try to help.
A: Thank you for the questions. First, I would speak to your gastroenterologist regarding your symptoms and determine if they are due to the Crohn’s or something else. At this point, the two of you can also discuss potential adverse effects from the Lialda. There are other medications in the same family as Lialda and you and your gastroenterologist can discuss the most appropriate treatment plan. By “drinking,” I imagine you are referring to drinking alcohol. Limiting alcohol and a gluten free diet may help but no diet has yet been proven to decrease inflammation from Crohn’s disease that is causing symptoms. When patients have active intestinal inflammation, it may be helpful to decrease high fiber foods and perhaps dairy products and caffeine. I suggest using a food journal to recording food intake and symptoms to determine if certain foods trigger symptoms.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I was diagnosed with Crohn’s in Nov 2014. I am on 200mg of 6mp per day. The doctor says I am in remission but I am having strong to almost severe muscle pain, weakness and fatigue. Can these symptoms be related to Crohn’s Disease?
A: Thank you for your question. The symptoms that you describe are not specific to Crohn’s disease and can be seen with many other disease processes and medications. If a thorough evaluation that may include some combination of endoscopic evaluation (i.e., colonoscopy), imaging, and labs has been done to confirm Crohn’s disease remission, then it may be reasonable to evaluate if the dose of the 6-MP is appropriate. This can be done through lab work.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
June 2015
Q: I have Crohn’s and currently on Entocort. Is Entocort a good option for lifetime care for Crohn’s?
A: Good question. Entocort has been studied in Crohn’s disease for up to one year but not beyond. According to these studies, it appears to be most effective within the first 3 months and less effective afterwards. However, some patients may do well on entocort beyond 3 months. The key is regular follow-up with a gastroenterologist with routine labs, colonoscopy, and perhaps imaging evaluating for active intestinal inflammation. During these evaluations, if there is any evidence of nonresponse to entocort or progression of inflammation, an adjustment to your therapy can be made early.
ANSWERED BY:
Sasha Taleban, MD
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
Arizona Health Sciences Center, Assistant Professor of Medicine, Director of IBD Program
January 2015
Q: I have had an ileostomy for Crohn’s disease for 30 years. At the time of the surgery, my rectal stump was left. I have had several other surgeries since for endometriosis and have problems with adhesions. For the past 5 years, I have been well but surgeons want to remove my rectum because of the cancer risk. I have read conflicting statistics as to the cancer risk of rectal Crohn’s disease after 30 years. What is the risk of rectal cancer?
A: Any of the intestine affected by Crohn’s disease is at risk for developing Crohn’s disease, and out-of-circuit diseased rectum develops cancer in approximately 10% of cases after 15 years of follow-up. And, the longer the rectum remains in place, the greater is the risk for cancer. Accordingly, it is recommended that the unused rectum is inspected and biopsied every year to detect any precancerous or cancerous changes. If these changes are noted, the rectum must be removed. If the rectum can no longer be endoscopically evaluated because of a narrowing, or stricture, its removal is usually advised if adequate surveillance has not been performed for more than 5 years.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
January 2015
Q: Since my ulcerative colitis was diagnosed, I have been given an ileostomy and had it removed three times. I was told in 2007 that my current ileostomy would be permanent. I recently went to a new surgeon who told me it was possible until he saw my records and said I have too much scar tissue. How long does scar tissue persist in the abdomen after these surgeries?
A: Intra-abdominal adhesions are commonly seen in anyone who has undergone prior abdominal surgery. These adhesions begin to develop within 7-10 days of surgery and continue to increase for a period of time. The body then starts to dissolve these adhesions until they no longer disappear, and this usually occurs 6-12 months after surgery. Any adhesions that remain after that time interval are likely permanent.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
January 2015
Q: I have problems with scar tissue following repeated resections of my intestine. I have lost half of my colon and quite a bit of ileum. This will be my fourth surgery. Will a low residue diet keep me from requiring an operation?
A: Intra-abdominal adhesions cause difficulties in a minority of patients. When problems do arise, they are typified by bouts of cramping pain, nausea, abdominal distention, and a change in bowel habits. Patients with Crohn’s disease can experience similar complaints when active disease affects the small intestine. It is important to distinguish between symptoms caused by adhesions and Crohn’s disease because the treatment is markedly different.
An operation is currently the only way to disrupt symptomatic adhesions, but carries the risk of additional adhesions and is avoided when possible. A partial obstruction can sometimes be overcome with a low-residue diet because the foods in this diet are more easily broken down into smaller particles and contain less than 10 to 15 grams of fiber each day. Foods included in a low-residue diet are cooked vegetables, fruits, meats, and white breads. Raw vegetables, beans, legumes, nuts, seeds, and whole grains are avoided.
With the right food choices, a low-residue diet contains an adequate amount of nutrition, but some supplements (calcium, folic acid, vitamin C) are recommended if the diet is followed for an extended period of time.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2014
Q: I had a resection of the terminal ileum for Crohn’s disease in 1967 and now have a very small tight anastomosis. Would an elective resection be beneficial at this time? I am 76 and fearful of blockage?
A: These blockages can be sometimes managed with dilatation using a colonoscope, especially if they are less than 2 inches in length and not associated with any abscess or fistula. If this approach is unsuccessful or inappropriate and the stricture is causing symptoms, an operation can be performed to remove the segment of narrowed intestine. Strictures caused by scarring without associated inflammation are usually unresponsive to medications.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
October 2014
Q: I was diagnosed crohn's (jejunum) following diagnostic laparoscopy that ended with removal of 11" of small intestine. I was to start on Remicade three months post surgery. I am still on a liquid diet and having pain and bloating. Drs. are backing off because they can't "see" the area to assess/monitor. Pill camera patency pill failed again. During surgery, the surgeon saw more extensive damage, but could not remove it all. What other measures can they use to confirm the pathology report?
A: The segment that was removed should provide ample material to confirm a diagnosis of Crohn’s disease. Imaging studies such as CT or MR enterography can be used to visualize the remaining small intestine as can some forms of advanced endoscopy.
Your symptoms may be caused by extensive inflammation in some of the remaining small bowel. If this disease cannot be managed with medical therapy, surgical treatment can be employed whereby the involved segments can be widened without removal of any intestine using a procedure called a strictureplasty. Operations in these more complicated scenarios are sometimes best performed by a surgeon experienced with the surgical treatment of Crohn’s disease.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
January 2013
Q: I have a ileostomy bag that was supposed to be reversed after six months, but never was (had surgery in 1998). The surgeons says that I can’t get the surgery to reverse the bag cause it’s been too long of time. Is that true?
A: The issue of whether an ileostomy can be reversed is based on several features that are unique to each individual patient. These issues include the initial reason for the ileostomy and the condition of the bowel that has been unused. If the ileostomy was created because the unused bowel was diseased, the ileostomy can only be reversed if the previously diseased bowel is removed and the remaining unused bowel is healthy and functional. Alternatively, if the ileostomy was created to protect a surgical site created in previously non-diseased bowel, the ileostomy can be reversed if the remaining unused bowel is healthy and functional. In either situation, recovery from reversal of the ileostomy may be more difficult and prolonged if the ileostomy has been in place for a long period of time.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I have been on adalimumab for 2 years with great success. During this time I have gained about 30 lbs, been diagnosed with high blood pressure, and high triglycerides. Are these side effects of the adalimumab?
A: Adalimumab has been extensively used for a variety of conditions and its side effects are fairly well described. Comparing patients receiving adalimumab to those not getting adalimumab, high blood pressure occurred in 5% of people receiving the medication and 3% of the others. High lipids were seen in 7% of patients treated with adalimumab and 5% of those not using the medication. Excessive weight gain is not typically seen as a direct result of the drug.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I am 64 years old and have had Crohn’s/Colitis for 40 years. I have had a flare and am now taking 6MP with 5 mg prednisone. I feel that I am stable. Are there long term effect of continued use of either the 6MP or the 5 MG of prednisone?
A: Azathioprine and 6-mercaptopurine (6-MP) are immunomodulators that are chemically similar and generally used to maintain remission in Crohn's disease as well as ulcerative colitis. Both medications have a slow onset of action (3-6 months for full effect). Reported side effects associated with their usage include diarrhea, headache, nausea, and vomiting. Exchanging the drugs can occasionally reduce some of these reactions. Fever, joint pain, liver inflammation, mouth sores, and skin rash are unlikely to be affected by switching the medications. Less common side effects include inflammation of the pancreas, also known as pancreatitis, and bone marrow suppression that may increase the risk of infection or serious bleeding. Because of these effects, blood tests should be frequently performed to measure the impact of these drugs on the bone marrow, kidneys, and liver. Some reports have described an increased risk of lymphoma, which is a type of cancer affecting the lymph glands. However, other research has shown that for most people the extra risk is small and outweighed by the potential benefits gained from treatment.
Corticosteroids similar to prednisone are naturally present in the body, but the higher than normal dosages commonly needed to control inflammation can produce undesired effects. These side effects usually disappear when the medication is reduced to normal dosage levels (Prednisone 5 mg daily) or discontinued. However, the impact of long-term steroid usage is sometimes irreversible and these changes include cataracts, diabetes, easy bruising, and glaucoma. Furthermore, the body’s natural ability to produce hydrocortisone might fail to recover when the medication is stopped after many months or years of steroid treatment.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
December 2012
Q: I was diagnosed with Crohn’s just a few months ago. I took prednisone first then mesalamine, but am still experiencing symptoms. The doctor now wants to move me to biologics, but I want to move more slowly and first try increasing the dosage of the mesalamine. If that doesn't work, what would the next step be?
A: Patients with Crohn’s disease can be managed with multiple classes of medications including antibiotics, aminosalicylates (such as mesalamine), corticosteroids (such as prednisone), immunomodulators, and biologic agents. With the exception of corticosteroids, most of these medications can be prescribed on a long-term basis. Some clinicians prefer to start patients on the most mild of medications and escalate the potency of treatment only if the disease fails to respond to therapy. Others begin with the strongest drugs and then transition to lesser medications when the disease has been adequately controlled.
If your disease was initially managed by a corticosteroid, but you relapsed while on an aminosalicylate, you would be a candidate for corticosteroids or biologic agents. Immunomodulators would be likely used in combination with the corticosteroids so you could be eventually weaned off the steroids and continued on the immunomodulators in order to maintain the steroid-induced remission. Disease remission achieved with biologic agents can be maintained with long-term biologic agent usage or you can be transitioned to less potent medications for long-term therapy.
ANSWERED BY:
Scott Strong, MD
Professor of Surgery at Northwestern University Feinberg School of Medicine
Professor of Surgery at Northwestern University Feinberg School of Medicine
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