Skip to main content

Hi everyone,
I haven't been on here in a while.  It's so nice to have a place to come and be 'understood'!
I've had my pouch since 2014 and basically it's functioning great.  However, I do have a fistula that hurts and reminds me that I'm still a work in progress.  I did both remicade and humira and developed antibodies.  I am currently injecting cimzia and taking azathioprine nightly to calm the immune response and tell my body to stop with the fistula!
However, the only thing that clears it (and I mean, totally clears it and makes me feel perfect) is antibiotics.  I have been cycling on flagyl and Cipro (2 weeks on, one or two weeks off, then starting again because the fistula grows) for a while. Last time, just to mix things up, I did two weeks of augmentin and it worked sooo great.

My questions are... how long have you guys stayed on antibiotics? 
What kinds did you use? 
How did you cycle?
Was/is it for fistula or pouchitis or something else?
Is there anything I should know about long-term antibiotic use?  My doctor is very supportive of what I want to try... so I just need some advice from you all.

Hopefully, this information will also be helpful to others. Thank you in advance!

Tags: antibiotic, fistula, Cipro, cycle, long-term

Replies sorted oldest to newest

I've been on antibiotics for about 6 years for pouchitis, with excellent results. Because I couldn't find an assortment (or even a pair) that worked, cycling/rotating wasn't really an option for me. I've been on Cipro essentially all of that time, and added Flagyl a couple of years ago when Cipro alone lost efficacy. I've been careful to find the lowest effective dose, and of course I've been lucky.

Scott F

I've been rotating Levaquin and Xifaxin (2 weeks for each, then swap) for about 4.5 years for poichitis. After using entocort on top of that but being unable to wean off without flare, I stopped that and added Immuran (while continuing to rotate the antibiotics) -that's been about 2.5 years on that combo now and all is working great!

J

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×