Hi Everyone. I haven't posted in ages. After being on antibiotics for pouchitis (4 different types to be exact) and none of them working on me, I am now being told I may either have antibiotic refractory pouchitis, or...chron's. I am 19. I was diagnosed with UC when I was 9, jpouch at 11. This is something that has never occurred to me. So, I am just wondering if anyone could give me your thoughts/experience/advice for when I find out if I have chron's or antibiotic refractory pouchitis after my scope. What are treatments for antibiotic refractory pouchitis? What are treatments for chron's in the pouch? Thank you all for your support and thoughts.
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MADS, when single antibiotics don't work for pouchitis sometimes a combination (e.g. Cipro+Flagyl) will do the trick. That's what I'm on with good success. Also, have you tried Xifaxan (rifaximin)? It works quite differently from the other antibiotics.
If antibiotics are really no longer useful, an appropriate biologic medication may work for you. One of these might work whether it's pouchitis or Crohn's. There are also more medications for Crohn's than you might expect, and they often bring things under good control.
It can be very hard to distinguish UC from Crohn's - they never did manage it for me. You can have a great life without knowing for sure.
Best of luck!
Did you read the articles that are linked in the "sticky" post at the top of the Pouchitis Forum? It is very comprehensive in regard to all the pouchitis treatments.
https://www.j-pouch.org/topic/n...icle-about-pouchitis
As for myself, I was doing OK on continuous antibiotics (a rotation of Cipro, Flayl, and Xifaxin). However, my GI was not keen on this as a long term solution. I had been on a variety of biologics (for arthritis) in addition to the antibiotics. I am now on Remicade for over six months and doing pretty well. Pouchitis is in remission (clinically, no scope yet) and my arthritis seems stable. I have not needed antibiotics.
Jan
Thanks for the replies! I have been on combinations of cipro and flagyl, different dosages, and riafaxin and tinidazole (I am not sure how to spell these things I am sorry). And I will be sure to read about the other pouchitis treatments! Thank you again