Is this Pouchitis?

Hi Peter!

Having a j-pouch is much like anything else in life. It is all great, until it isn’t. I also had a good long run of very good pouch function. Then came pouchitis, that evolved into chronic pouchitis. I kept things under control by rotating antibiotics: flagyl-cipro-xifaxin, but my GI was not keen on using antibiotics full time, even on a rotating basis. This was when I started Remicade infusions with oral Imuran. Believe it or not, it has worked! That was more than 5 years ago, I think, and I have since switched to the biosimilar Inflectra.

I did not expect it to work, since I had already been on other biologics for years. Yes, it is a hassle going in for infusions every 6 weeks, but it beats having chronic pouchitis! 

So, maybe it is time to discuss this approach with your GI. As long as you do not have Medicare, there is patient assistance that covers your copay (not dependent on your income). So do not let the cost stop your treatment.

Jan

Jan! So happy to see you again Thank you for such a quick reply - I will have to ask my doctor about Remicade/Imuran. I'm up here in Canada, so I'm not sure what's available. The side effects on the drug websites are quite scary to read!

Do you think it's worth a shot asking for Xifaxan first? 

This forum is bringing back so many memories! I remember participating in live chats, where we would laugh and joke about butt burn! 

There are plenty of good reasons to try rifaximin (Xifaxan) first, as long as your health program will pay for it. The other thing worth a try is a high-dose probiotic, like Visbiome Extra Strength. VSL #3 helps me significantly.

Although I generally prefer trying one antibiotic first, the fact that the combination of Cipro and Flagyl failed probably saved you a step (i.e. it's unlikely that either one alone would have worked), unless one of them is *causing* a problem.

Good luck, Peter!