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Ulcerative Colitis
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Posted 12/11/2020 7:05 PM (GMT -5)
I just had a scope and I have more inflammation than last year. He was talking about a redo and blood supply issue

I actually thought I was doing well because I had no significant symptoms but then again I'm getting used to the jpouch still so I don't know what's normal
Posted 12/11/2020 11:25 PM (GMT -5)
Who are you dealing with? The original surgeon? I'd definitely get multiple opinions before doing anything surgical, and of course, if you're feeling well, maybe try to use medical options before surgery. Also, redos are difficult and not that common. A specialist in pouch redos might be a good option. Do all your research and do not rush.
Posted 12/12/2020 6:44 AM (GMT -5)
What medical option do I have? What's the common treatment here?
Posted 12/12/2020 7:57 PM (GMT -5)
Maybe biologics
Posted 12/13/2020 1:28 AM (GMT -5)
Even if there is a blood supply issue? Doesn't that automatically mean new surgery?
Posted 12/13/2020 11:26 PM (GMT -5)
I thought you had inflammation in the pouch causing your troubles?
Posted 12/14/2020 12:37 AM (GMT -5)
Yes which may be caused by lack of blood supply
Posted 12/14/2020 2:09 AM (GMT -5)
Andrina, sorry to hear that you've had such a difficult journey and now have to deal with pouchitis. This disease is never ending even with surgery for some. I've also had UC for 20 years and this year developed additional awful medical issues so I feel like I don't get a break.
Posted 12/14/2020 11:48 PM (GMT -5)
Is there a way to find out if that's the case? I think I'd try a biologic and see if it stops the inflammation and decreases symptoms. Better to try that than to have surgery and realize it wasn't a blood supply issue.
Posted 12/16/2020 11:32 AM (GMT -5)
I'm worried biologicals will not work since I failed them while having a colon. I'd be willing to try but I'm worried I'll get disappointed again. I really struggle with the thought of a redo and having a temporary or permanent ostomy

Jane I'm sorry to hear you're struggling as well. I tried SCD as well and it didn't give me the relieve I hoped.
Posted 12/18/2020 6:58 PM (GMT -5)
So ummm I started antibiotics yesterday and today haven't had a bowel movement yet even though I ate. Does it mean the antibiotics are working? I really just want to find a treatment, not have surgery. I'm cautiously optimistic but I understand that treatment can fail after some time. Does the fact that it works prove that this is not a blood supply issue?
Posted 12/18/2020 11:38 PM (GMT -5)
I think the antibiotics might be managing the pouchitis but biologics might work better for daily prevention and treatment. I'd give them a try. I don't think the fact that they didn't help your uc should be seen as a definitive 'no'. Think positive. Hoping for a solution for you.
Posted 12/23/2020 11:44 PM (GMT -5)
I'd be willing to try them. I also haven't tried stelara and entyvio and I feel I didn't give xeljanz enough time. I just hope my GI agrees with biologicals. And my insurance.

The antibiotics are making me so miserable, I can't stand it. First, I don't really think they're helping. I've been soiling myself more than before. Second, my appetite is gone. Third I get stomach cramps from hell. Not intestinal cramps but actual stomach cramps. I'll definitely lose some weight over this.
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