Recurrent pouchitis

My recurrent/chronic pouchitis didn’t start quite so soon, but I was able to put off antibiotics for a couple of years with VSL #3 DS at a pretty high dose. Eventually I did go on antibiotics full time, and that’s worked quite well for me. VSL helps me get the benefit at a lower dose, it seems, so side effects haven’t been an issue, and things have been completely under control for years. My advice is to find what works to enable you to live your life fully, and embrace it.

Thanks Scott. How long did you go on the antibiotics for when you were on long term? Did they not become less effective over time?

I am taking 4 sachets of VSL daily (2 morning and evening) but that only started 3 days ago so prob won’t see an effect yet, esp as pouchitis is currently active. Like everyone else I don’t like the idea of long term antibiotics as I had c.diff infection as well as severe UC when I had the emergency colectomy, really don’t want c. Diff again!

C. diff is no fun, that’s for sure. Cipro can predispose you to C. diff, but Flagyl doesn’t. Flagyl is even used to treat C. diff, though it often isn’t very effective.

I first went on long-term Cipro in 2009 (approximately). I wasn’t able to find any other antibiotics that worked, including Flagyl, so I unfortunately couldn’t rotate antibiotics. Cipro alone did the trick for about 5 years, and then began to lose effectiveness. Surprisingly, adding Flagyl worked like a charm, and the combination has continued to work for me very nicely. I’ve worked hard to find the lowest effective doses of each medication to minimize side effects.

If the antibiotic combination stops working then I’ll probably start on a biologic medication. What’s important to me is that I live my life like a healthy person, without the bathroom exerting power over me.

New Pouchie,

I was also diagnosed with chronic pouchitis right out of the gate.  My first course of antibiotics was 6 weeks after reversal.  Kept trying 2-3 weeks on antibiotics and tried to get off, but as soon as I'd stop, symptoms would return.

So, currently, I rotate Xifaxan, Flagyl, and Alinia.  Usually on each for maybe 3 weeks at a time.  Been using these for a few years now and still all work well.

I didn't understand antibiotic rotation, and no one really told me about it at first, so I was on the Cipro for 6 months straight after my reversal.  This one no longer works for me.  Then, I switched to Augmentin, and I got pregnant right after I started.  Augmentin was the recommended antibiotic to be on for my entire pregnancy and during nursing.  So I was on this for about 15 months.  After 15 months, it completely stopped working, so I decided to switch to stop nursing so I could get onto something else.

I read about Pepto Bismol on this site and how great that can work since it kind of works like an antibiotic.  It was amazing.  I was on that for maybe a year but again, it didn't click with me that I probably should have used that in rotation.  This one also no longer is effective for me.

That's what I know for now!  Rotation is key.  If you start off doing it right, you can probably keep them going for a very long time.  Don't stay on anyone too long.  We still have several antibiotics lined up for me if I should need them to use in the rotation, but for now, I'll stick to these three.

Like Scott, have been doing this for awhile, so let me know any other questions you have.