Community Forum

Hi,

I'm brand new to this forum and am seeking some advice and information about others' experiences with surgery to remove their large bowel. Like many faced with this reality, I'm completely freaked out, terrified, and traumatized by this whole ordeal and the idea of having my large bowels removed sends me into a crying fit. I'd like to know if there is anybody out there who has had this surgery done and can discuss what their quality of life has been like since having the surgery. I hear people talk about a J pouch, a bag, or reversal surgeries and I know NOTHING about any of this, though I'm starting my research today. I was trying to have a baby when all this happened and wanted to know if any others out there have had children after this surgery. Are there diet restrictions? medications? or changes in lifestyle that you had to make? or is it as easy as my new GI makes it sound...that's surgery is a "cure" for UC. 

I've had mild UC for 17 years and only used Rowasa or Canasa periodically to control minor flare ups through the years.  However, in October 2012 my previous IG recommended that I begin taking Lialda--an oral mesalamine as a maintenance drug.  Within 3 days of taking this medication, my flare intensified--bleeding quadrupled, pain went crazy, lost strength and the ability to really eat. Eventually I landed in the hospital with severe malnutrition, dehydration, and massive inflammation. After being discharged I was placed on 40 mm of Prednisone to control the flare, but it didn't really work.  So I was placed on Remicade infusions in conjunction with the Prednisone, which worked for about a week or so. But, as the steroids were weaned, my symptoms began to return. I've had my 2nd infusion with little improvement. I'll have the 3rd infusion and will try Humira if this doesn't work, but doc says surgery is my likely diagnosis. Any info/insight is a blessing! Many thanks...

 Reply posted for zurinawatson.

Hi I was diagnosed with uc after only a couple of months of been poorly in which  I almost died I was tried on every medication possible in which all failed I was only 32 never shown a sign of uc ever before do this came as a big shock to me and as a mother of four the stress was unbearable I was hospitalised for 8 weeks which was the worst time of my life been away from my family and been so ill I didn't recognise anybody around me  I went from 9stone to 5stone in 8 weeks I had emergency surgery to remove my large bowel this was heartbreaking for me but saved my life it was a very difficult time afterwards losing a lot of my hair  in general getting bk to full health at times I never thought I could go on but now 18 month on I have never felt  so good I'm back to my full weight  I look like I used to  and to top it all of I was due to speak to my surgeon for a reversal but unfortunately has to be put of as I am 3 months pregnant and extremely happy😃

 Reply posted for dimplezz.

I am undergoing test, this all are the part of diagnosis procedure. Nowadays to overcome my fatigue and depression I have started consuming honey in my daily diet. Honey helps in keeping my bowel movement regular. I recommend you should also add honey in your daily diet. See this site to view more uses of honey.[http://www.comvita.com.au/ingredients/about-manukahoney.html

 Reply posted for gemini72.

hi! i decided to check in on this board since it was a huge help to me before. i had a 2 step jpouch surgery in feb and april of this year. it was a tough recovery but nothing compared to the *** of having uc and  accidents and all meds fail. it is a huge decision, but if you do decide...please speak to a few surgeons that are colon and rectal surgeons. my insurance sent me to horrible unqualified rgeons before i saw the one who did my surgery. dr steven mills at uci in california. amazing! i am a mommy/wife and can now act like one:) please feel free to email me if you need more support/ help. forums/ boards are what really got me through everything. blessings!
jen
jenpen1980@hotmail.com

 Reply posted for gemini72.

Gemini72,

I just recently went through my surgery (July 10th, 2013). If you would like to talk, send me an email at amanda.brinkley87@gmail.com. 

 Reply posted for shelbybyours.

By the grace of God, I ended up making a full recovery. I'm currently on Remicade infusions every two months. But I fully believe that VSL 3, a prescription strength probiotic, is what saved my bowels. Within 2 days of taking this probiotic, all bleeding had stopped. I truly, truly wish you the best and will keep you on my prayers. You have to do what your heart and soul tells you is right. Crying over such a decision is completely understandable. I don't know how sick you are or which IBD you have, but such a big, life altering decision needs to rest well with you. If you ask me, I think that a lot of UC is due to yeast overgrowth run rampant. After taking VSL my bowels started to heal.  I've been in remission for several months and deeply wish the same for you. I prayed and prayed and did heal in time. I will keep you in my prayers. Ease let me know how you make out. God bless you.

 Reply posted for gemini72.

please tell me what your life has been like  i found out last week my surgery will be next week aug 15th 2013  im scared to death they are taking out 90 % of my colon  ive cried   i feel like im bout ready to loose it all  my nerves are on edge just this last week i think ive got my whole family hating me im so on edge .............

 Reply posted for gemini72.

I can only relay my experiences.  I was 9 when diagnosed with UC.  Had my first surgery at age 12, the doctors told me if I didn't have surgery, I would die by the age 20.  I told my parents I had a lot more living to do.  Spent 1 1/2 months on total parenteral nutrition, just to build up my body to handle surgery (yup, my nutrition was that bad).  Back then the surgery was totally new and not common in kids so I was an experiment.  The surgery was to be done in 3 phases.  Being the overachiever I am, I had to have 4 surgeries.  I had all the complications, adrenal crisis from steriods being stopped too fast, bowel obstruction (I ate an apple), bowel got twisted and kinked, my stoma tore at skin level, I had an abscess develop.  I have outlived my 20yr life expectancy by 28 yrs now. 

 Reply posted for cutrell91.

I loved this post from Cutrell91.  This is inspiring, and something I needed to hear.  My son was diagnosed with Crohn's at age 12, and he is a very active, athletic boy.  I don't know what the future holds, but I know it is likely that he will have surgery some day to remove part of his colon, and with his age of diagnosis, multiple surgeries are likely.  We are having trouble getting the inflammation under control now.  He probably won't be the professional athlete he dreams of being (most kids have that dream, but it's good to have a back-up plan because few make it - with or without a chronic condition).  But, I want him to have a good quality of life, and I don't want Crohn's to ruin any of his future happiness.  Thank you for sharing your story of strength and determination!  

There are a number of resources that can help you learn about the procedure and life after surgery.   Check out this brochures www.ccfa.org/assets/pdfs/surgery_brochure_final.pdf.    Also check out the United Ostomy Associations of America at www.ostomy.org

 Reply posted for gemini72.

Is it true that the process is a year long and 3 stages in order to cure UC?

I am also new to this forum and like so many others, am facing the decision of whether to have surgery. I have had ulcerative colitis for 11 years and been on most medications. My symptoms never go into remission. My life seems to revolve around this illness and I tend to "suffer in silence" due to the embarrassing nature of the symptoms. I am so sick of not being able to do everything I want for fear of having to find a restroom quickly. For many years I didn't want to even consider the surgery, but now I'm to that point where I realize I may have to if I want any sort of life. I'm fearful of the unknown. What would my life be like afterwards? I wonder about the possibility of having the surgery and then miraculously there is a medical breakthrough. What if something as simple as the fecal transplant really can heal colitis? There is no going back once your colon is gone! I'm single and in my 30's so that does not make this decision any easier. Like I said, I have suffered for 11 years and sadly this is the first time I am reaching out to others who have similar issues.

 Reply posted for gemini72.

Hi,
life is great after surgery.

September  2011 I had  the balance of my colon removed ...(I do still have my rectum)

The doctor simply "reconnected" the ileum to the rectum and I am "good to go".

i do have more bowel movements than normal people, but not as many a i did with active disease.  

I am on methotrexate but had to d/c remicade in 2008 due to breast ca diagnosis.

Once again, I came through the storm and feel great.
i am richly blessed !

hang in there

 Reply posted for gemini72.

I really cannot give any insight into the actual procedure because I have not had it done. Just know that every single person with UC I know that has had their colon removed says they wished they would have done it years prior. Good luck with whatever happens and know that you have many people that are here for you whenever you have any questions or just need to talk. Take care! :)

 Reply posted for dimplezz.

Hi...
I am new to this forum.  My name is Jennifer and I have had Crohn's Disease since 1998.  I just went for my yearly colonoscopy yesterday and got the news that not one of us wants to get...I will need an ileostomy in the very near future.  The doctor has told me this for probably about the last year but I guess I was trying to hide the big elephant in the room by pretending it wasn't there. LOL.  Well it's out and obvious now.  I am emotionally spent and just plain tired of fighting this disease.  I guess I am just looking for some insight and encouragement.  Since the colonoscopy the abdominal pain has gotten worse and I told my family I can no longer hide how I am truly feeling.  I have a really great support system for which I am really thankful for but I am now trying to get a conference call with my GI doctor to go over my options to get this process started.  I have thought about going on Disability but I also look forward to going to work everyday but I don't have enough sick time left this year to be able to afford my bills without my income from work.  Can any one give me some help please???

 Reply posted for diva4.

Thank you to everyone who responded to my post! I truly feel blessed that anyone responded to my pretty desperate plea for 
information. Since my first post, I've had a blood transfusion, which really made me feel better, and I began a regime of vitamins, lots of rest, a new diet, and started taking VSL3, which really really helped my bowels heal. I'm still on prednisone but am weaning down and am on Remicade. *Fingers crossed*...my doctors thinks I'm on my way to remission and surgery is off the table and out of the discussion right now.  God willing, I'll keep in remission for years to come and won't need surgery ever.  If all continues to go well, my husband and I can again start trying to get pregnant in June. 

Thank you again! I'll keep you all in my prayers and wish you all good health and happiness! 

 Reply posted for gemini72.

I had half my colon removed because of a large pre-cancerous polyp.

The recovery period was predicted to be 6-8 weeks but i was able to prepare meals, do light housework and walk well s in moderation after the third week. After the eighth week I was as good as before and actually a little better. That was two years ago and at 82, I feel pretty amazing and control my IBS and non diagnosed celiac symptoms with the SCD Diet.

I have had chemical and environmental sensitivities , reactions to electronic emissions  and a a compromised immune system since March 2000. With research, avoidance and my wonderful diet, I am more active than any other friends my age and some that are younger.

 Reply posted for Gemini72.

Be careful. This is a disease you can pass on to your children. Think real hard about if it is something you want them to go through! 

 Reply posted for Gemini72.

Hii!!

How are you? I hope you're feeling better after the transfusion. It made me feel pretty normal ;) I'm glad you are feeling more positive!!
My experience before j-pouch surgery was kind of emotionally traumatizing but since it was temporary it was tolerable. I had an external pouch for 22 months because I had lost a lot weight in the 2.5 yrs I tried to save my colon. The last 2 surgeries were laparoscopic so it wasn't that painful. Just have to take it one day at a time dear. Take care of it as a naughty baby. I named the stoma "potty mouth"...lol. Its easier to deal with the external pouch with a good sense of humor. It's not the end of the world. Some people have bigger problems than us. The pain is mostly over in the hospital stay which is 3-4 days. The docs give morphine so it's not that bad. Just mediate & fill yourself with lots of positive vibes because they will help you during & after surgery.

I hope you don't need surgery but if you do, please don't feel negative about it. Try the turmeric, boswelia, Manuka honey, & probiotics to see if they make you feel better.

Take care champ!!

You can also email me at stardeck98@yahoo.com

 Reply posted for StacieL.

Stacie,

I'm so very sorry to hear about your experiences with the surgery and thank you for sharing.  This, I suppose, is my worst fear. That I have the surgery and it doesn't pan out as expected or hoped.  But you've been honest and I thank you for that.  I will keep you in my prayers and hope that things open up for you and improve.  Some people have told me that the healing time is quite long and that they, too, went frequently but that things tappered off over time.  I hope this is the case for you too.

Sending you much good will your way,
Arline

 Reply posted for Dimplezz.

Thank you so much for your post and for all the information.  I'm due for a blood transfusion tomorrow and hope that we can stave off surgery with trying other medications, since we've only had time to try Remicade, which isn't working.  I've been told there are other drugs to try but...if my condition continues to decline quickly, we may not have the chance to try those drugs.  The thought of having my large colon removed scares the life right out of me.  I imagine having a semi-complete fulfilling life afterwards and worry that it may not work for me.  But you've given me hope and for this I am very grateful. 

Can you tell me what your post surgery experiences where...prior to the J pouch surgery? How traumatizing is it to have the external pouch? What was your pain level like, how long did you stay in the hospital and what long term side effects do might I expect to have?  You're post has kept me positive...though I'm still really praying the other drugs do finally work for me. 

I send you lots of gratefulness for responding and helping out a fellow human being who is really reeling with terror at the moment.  But, as you say, I must be positive!!!
Thank you so much! Arline

 Reply posted for Dimplezz.

Just want to thank you all from the bottom of my heart for responding to my very terrified and dire post.  I was told today that I need a blood transfusion tomorrow due to a very low hemoglobin rate.  The funny thing is, I haven't been sick all that long...just since about November 12, but things have gone down hill pretty fast.  I'd like to bide time so that we can see if other medications may work since the Remicade clearly isn't.  But, alas, I don't know. 

I love my colon--I've named her Inez LOL-- and would like to keep her, but don't know what the Universe has stored for me on that end.  Please know that your responses have been very, very helpful to me and that I see you all as little angels giving me insight and support as I journey through what has been the scariest time of my entire life.  I'll keep you posted on what transpires and appreciate any prayers you all can send up.  You all are in mine.  Thank You so much for responding!!!! 

 Reply posted for Gemini72.

surgery is scary to think about but believe me its so worth it. before surgery I was taking so many pills and shots, I Was in the bathroom every 20 minutes and every hour at night. I was exhausted all the time and really couldn't leave my house. My surgery was Dec 10 and I've never been healthier. I can do everything I wasn't able to prior to my j-pouch. Your diet will have to change but in time you'll have a mostly normal diet just educate yourself and talk to your dr/cf peps. I wrote a blog about my experiece if it would help  http://inhospitalbeds.blogspot.com/. With children I was told to freeze my eggs b/c it would be too hard to get pregnant. My surgeon laughed at that. I'm 61/2 months pregnant and had no problems conceiving. The pregnancy itself has been about as smooth as you could imagine. there are some complications that could happen but nothing serious to you or baby, just annoying, talk to your dr about it. if you want to talk feel free to email me molly.gallegos@gmail.com. Good luck!!

 Reply posted for Gemini72.

I'll keep it short, I had a total colectomy when I was 15 years old due to UC that lead to mega colon after meds didn't work for over a year. I was very active before (baseball football basketball cross country and track) and post op wasn't approved for contact, so I stuck to running and finished highschool as a state champion (400m and 1600m), school record holder in 400m and now a collegiate athlete at an SEC school. Not saying this to brag, just letting y'all know that life post-colectomy is amazing and more than just possible. Keep your dreams alive, and anything is possible.

 Reply posted for mrs1107.

Manuka honey is thicker than regular honey so eat it on toast or with a spoon. You should take 3-4 spoons daily. All of these supplements can be taken before & after surgery to help with healing quicker.

 Reply posted for Dimplezz.

Did you drink the manuka honey?  How much?  Also all of the supplements, turmeric, etc did you start taking before all of the surgeries?   My spouse is having the 3 step procedure done soon, so just trying to better understand.   Also if anyone has any advice on what to expect (I.e. length of time in hospital, etc), that would also be helpful.   Thanks.   

 Reply posted for Gemini72.

I've suffered with what I thought was UC for almost 20 years (I'm 38 years old).  Turns out it was actually Crohns.  But that really doesn't matter.  I've been on all the medications, and prednisone was the only thing that kept my flares from being unbearable.  Eventually, the prednisone stopped working.  Surgery was my only option.  I did a lot of research, and found that most people report a higher quality of life after surgery.  This was comforting, so I made the decision to have the surgery.  I lived with a bag for 6 months, which I found quite traumatic.  Then I had the second surgery.  I was so, so relieved to get rid of that bag.  However, I was having lots of bowel movements.  Much more than the 10 I was told to expect initially.  It's been 7 months since my last surgery, and I'm still having about 20 BMs each day.  The doctors aren't sure why this is happening to me.  None of the medications have helped much. If I don't improve soon, I'll have to go back to wearing a bag.  I've lost a significant amount of weight, am constantly dehydrated, and I'm extremely fatigued.  I can't travel or sleep more than 2 hours at a time because of the constant diarrhea.  

I apologize for giving you such negative feedback.  I just wanted to let you know the surgery doesn't work for everybody. But it's a great option for most people, and I'm sure it will work for you.  But I would wait as long as you can (within reason).  There are still other medications you can try, and I bet they will work!  Good luck!!!

 Reply posted for Gemini72.

Hi Gemini,

I was also very scared just thinking about surgery & I delayed it for 2.5 yrs until I needed emergency surgery because my colon perforated during colonoscopy.

I had J-pouch surgery in May 2011 & it has been better than suffering with UC. The surgery is a cure but you still have to watch what you eat. Some people can eat everything & some have dietary restrictions depending on your body. I'm lactose intolerant due to UC so I can't have dairy but Greek yogurt, no seeds or high-fiber foods. Recovery after surgery can last upto 6-7 weeks depending on how soon you heal. Before & after surgery, eat Manuka honey from New Zealand(Amazon.com), turmeric capsules & Boswelia. They all help in healing inflammation. After surgery, you might have a lot of gas in the hospital. Drink ginger & fennel seed tea & try to walk as soon as you can to wake up your new plumbing system. Eat soft & easy to digest foods like soup & yogurt for the first few days after surgery & slowly start experimenting with different foods one day at a time. You might need Imodium to slow down the frequency of going to the bathroom.You should also take VSL #3 probiotic after surgery. It will help populate the gut with new healthy bacteria:)

Please don't hesitate to ask any questions.

Good luck & stay positive!!