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Hi Everyone!

I'm so happy to see this website and forum are still around. I had to re-register as it's been many, many years since my last visit.

Since mid-March when I stopped commuting to work and started quarantining at home like many others, I have had nothing but issues with my j-pouch. It all started with extreme urgency, smelly stool, and night accidents. I have never had an accident at night in the 14  years I've lived with my j-pouch. I talked to my doctor and went on a 10 day course of cipro and flagyl. This got rid of the smelly stool, but the consistency of my stool then became watery. Because of this, the urgency is still there. Picture pouring a glass Metamucil into the toilet (or don't; this may be TMI). Metamucil, Pepto Bismol, Immodium - nothing helps.

I have had  a pouchoscopy and the doctor said he sees inflammation and indicated pouchitis. I went on another 15 day round of cipro/flagyl and there was no change. I am now starting my 3rd 15 day round of cipro/flagyl and am not feeling hopeful. Is this truly pouchitis?

I remember reading one of @Jan Dollar's posts years ago stating that the j-pouch eventually becomes more colon-like, and this was the case for me. I really can't understand how my stools changed from thick/normal to water-like so quickly and have not returned back to normal in over 4 months.

I need advice! What do I do next? My doctor doesn't seem to have a roadmap for me, and I feel like I may have to live with my new-normal j-pouch function.

Thanks,
Peter

 

Original Post

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!

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