College and Crohns = stressful
Sat, February 01, 2014 7:49 AM
I am an almost 21 year old undergraduate student, diagnosed in 2003 with Crohns Disease. originally placed on 250mg Pentasa capsules (9 per day) in 2003 but my pediatric GI changed my dose to 6 of the 250mg Pentasa capsules/daily in 2010. I was hospitalized for 11 days between June and July 2013 after losing 52 lbs in a month, getting sick with the stomach virus, abdominal pain, fatigue, etc. when a catscan revealed an abscess in my ileum. I was treated with antibiotics and prednisone because the abscess was too small to drain by needle and catscan. After starting to feel better I started experiencing symptoms around Christmas/New Years. I was placed just hospitalized in Philadelphia after I went to the E.R. and a catscan revealed another abscess in my ileum and a most likely functional cyst in my right ovary. The GI doctor has suggested switching to Humira or Remicade, but I felt it was best to exhaust all other options first because I’m unsure what's covered by insurance. So she adjusted my Pentasa from 1500 mg/day to 4000mg/daily and has me on 2 antibiotics
I have been attending classes but haven’t been able to return to work yet. I have been very depressed and emotional but have been able to see a therapist one-on-one for free at school. My boyfriend, roommates, and family have been supportive but I am scared, stressed, and unsure of what to do next. They’re talking possible surgery as soon as the semester is over to scrape the intestine or remove the infected portion and reattach the good parts…but this is a last resort option.
I have a recheck catscan in a few weeks but if anyone could offer advice or suggestions to help me manage my symptoms (nausea, fatigue (I am anemic but I take iron supplements), abdominal pain, constipation/frequent usage of bathroom) and feedback on treatments. Also if anyone knows of great ways to manage stress or good diet ideas, they’d be greatly appreciated.
Joined Jan 31, 2014
Wed, July 30, 2014 7:35 PM
I know I'm several months late to this post, so this might not be useful information. I am currently taking Humira, and I feel healthier than while on Pentasa, 6mp, Prednisone, or Remicade. I was also worried about my copay but discovered that Humira has pay assist (I only pay $5 a month). https://www.humira.com/global/savings-and-co-pay You just sign up here
Joined Jul 30, 2014
Thu, March 20, 2014 6:38 PM
Reply posted for templeugirl32.
I also keep keep a food journal & try to find patterns for my symptoms. I also have been taking a probiotic & eating Activia and that seems to help a lot! I have been slowly able to introduce food back in & I feel like I'm pretty much out of the flare I was in. It's a tricky balance between diet, medicine, and lifestyle! It's scary & overwhelming starting new medicines, but just because a side effect is listed doesn't mean it'll necessarily happen to you & if you're suffering, the benefits might outweigh the risks! :) also, there are secondary insurances you can apply for (info is online) if your insurance doesn't cover the biologics. They're extremely expensive.
I hope this helps!! Sorry I didn't see this sooner! Hang in there :)
kro1019Joined Feb 24, 2014
Thu, March 20, 2014 6:36 PM
Reply posted for templeugirl32.
Also, iron can be constipating. Definitely talk to your doctor before you switch your dose, but I have been taking it every other day instead of every day. Also, talk to your doctor about the vegetarian iron option. I learned about that from the moderator of the crohns support group on this website...she said it's not as constipating). But she also said to talk to your doctor before you try it.
As for the stress, I have been feeling much more energetic from the Prednisone. I have been exercising (low impact stuff..no running because it hurts!!), and I got a deep breathing app on my phone for when I feel stressed. Other people with crohns have recommended tai chi & yoga. Does your college offer those classes? They might help! I also read for fun as much as I can!! It helps!
As for managing school, I'm trying to give myself breaks. I try not to overextend myself. I'm a nursing major, so my professors are really understanding. For example, I have a research project presentation due next week & we have the option of presenting it in the hospital where we do clinical & it's very nerve wracking because there are professional people watching! My professor asked my group if we would want to present & I said no. I knew I would stress about it & I would be extremely nervous until it's over, so I told my professor that I didn't want to overextend myself and I didn't think I should do it. I know not all college assignments are so flexible, but it's just an example of taking care of yourself first, even when you feel like you should do something that will stress you out!!
kro1019Joined Feb 24, 2014
Thu, March 20, 2014 6:31 PM
Reply posted for templeugirl32.
Hi! My name is Katie. I'm also a college student (I graduate in May!). I was diagnosed with UC in December 2013, but was re-diagnosed with Crohn's at the end of February 2014 because I had epigastric pain & CT scans showed chronic inflammation of my small intensities too. I missed 2 weeks of school & couldn't go on a mission trip over my spring break because of 2 hospitalizations.
I want to reply to your story because I was also really hesitant to start Humira because of all the side effects. My GI doctor explained it to me in a way that made me feel better though. She said people not taking biologics like Remicade or Humira are at a 1/1000 risk of getting cancer (like lymphoma), people on immunomodulators are at 5/1000 risk, and people on biologics are at an 8-10/1000 risk of getting cancer. I would rather be at a 0/1000 risk, but I also recognized that my quality of life was pretty bad without treatment. My GI doctor said I have an aggressive case of crohns, so she thought the sooner I stay humira, the better.
I started humira at the beginning of March & have been feeling so much better. I am also on a tapering dose of Prednisone. The combination has been working so well for me. Before this, I was on lialda (oral and enema) and I wasn't seeing any changes. I was in a flare from December to February.
As for the stress, I have been feeling much more energetic from the Prednisone. I have been exercising (low impact stuff..no running because it hurts!!), and I got a deep breathing app on my phone for when I feel stressed. Other people with crohns have recommended tai chi & yoga. Does your college offer those classes? They might help! I also read for fun as much as I can!! It helps! (I'm going to do another post because there's a character limit)
kro1019Joined Feb 24, 2014
Tue, February 04, 2014 10:00 AM
Reply posted for templeugirl32.
I want you to know you're not alone. I'm meeting with a MyHumira ambassador today so I cannot respond at length right now, but when I get home, I will tell you about the similar experience I am having now. Hang in there.
Joined Feb 4, 2014
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