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sjh2489
Hi all,

After having a scope done up at Mayo last week, I'm heading back on Monday to discuss my options with my doctors: they want to put me on Remicade because my pouch and ileum are severely inflamed (diagnosed from UC to Crohns not too long ago). I'm not keen on the idea of Remicade or its side effects and I'm prone to getting some weird infections so I'd rather just not feel like I need to constantly put myself in a bubble.

My question is: are there any pouchers in similar situations that were able to have their pouches temporarily disconnected to allow for internal healing or, because it is now Crohns and there is severe inflammation, will I just need to have my pouch removed and go to an end ileostomy? I know my doctor and I will talk about this soon, but I just wanted to know if any other pouchers were ever in similar situations and how they handled it.

Any input is appreciated!

Thanks,
Stephen

Replies sorted oldest to newest

C chiromancerMember
My Doc and I talked about a temp loop ileostomy to give me some breathing room but I rejected it. The decision I made to disconnect, have an end ileo and leave pouch in place didnt work out well. I had a lot of uncontrollable excretions from the disconnected pouch and opted 6 months later to have the pouch excised. Everything is good now.

I dont have Crohns, I just had a poorly functioning pouch. My personal opinion is, if you can, just make a decision and go with it tring to avoid as many surgeries as possible. You probably will have on going problems with the pouch due to the Crohns which will require being on medications to control inflamation. Now if you have to medicate anyway because of the Crohns it maybe worth a shot to try to save the pouch but if one could be med free (I am) after pouch removal that would, for me, weigh heavily in that direction. Good luck
C
Scott FScott FMember
If I were in your position (and I easily could be) i'd go the medical route first, since removing the pouch will not remove your need to manage any Crohn's issues. You really don't have to live in a bubble with biologics. As far as I know they leave your immune system in better shape than prednisone (though I guess that's not saying much).
Scott F
L LisaTMember
I was in the hospital for 19 days last Sept. and finally diagnosed with Crohn's. Initially, I had UC in 1995, j-pouch, and YEARS of excellent life. Then, out of the blue, I became sicker and sicker. I had a heart to heart with my long time colorectal doc. and he said that Remicade was worth a shot. He explained that pouch excision is a serious operation.

I'm doing pretty well on it. No side effects and my GI doc believes that the increased risk for infections is minimal. I am planning to go back to work in a couple of weeks. ( I teach 8th grade) and I'm nervous about the germs. He said wash my hands before I touch my face. Would I do it again, I probably would. It's not an easy decision, but as Scott said, if you have the pouch removed doesn't guarantee you won't continue to deal with Crohn's.
L
L liz11Member
Stephen, it is my understanding from CC docs that the patients they worry about the most are those with crohns who get their jpouches removed. Why? Because once the jpouch is out, if crohms remains active or starts up later... then it only has valuable parts of your small intestine to destroy. Potentially leading to short gut syndrome. So if you keep the jpouch and try to control the crohms medically, then you can preserve more of the small intestine. Taking out the jpouch does not eliminate crohns.

Also jpouch excision is a huge major surgery and active crohns could cause healing complications.
L
sjh2489sjh2489Member
Wow. You have all been very helpful and I really appreciate all of your input. I'll talk to my doctor about Remicade tomorrow...I'm still a little apprehensive as it just makes me uneasy knowing the possible side effects but I will definitely listen to his opinion on the matter because the thought of another major operation doesn't exactly sound pleasant right now, especially if there is no guarantee that it will solve the problem and could even potentially make it worse.

Thank you for your help everybody!
sjh2489

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