Hello all! I have had my pouch about 15 years. I had my first bout with pouchitis in February and every month since. My question for now (more to come I’m sure) is how long before a doctor will move on to another treatment such as biologics? How long did you stay on antibiotics before trying something else? 

Pretty miserable right now. Cipro has worked well but doc wanted to try xifaxan this go round. Seems to be taking much longer to help. My pouchitis causes extreme fatigue, fever and PAIN as well as the potty issues. 

Thanks for any input you can give me!

Original Post

If the antibiotics work well without problematic side effects they can be used for a long, long time. I started continuous Cipro in about 2009 and added Flagyl about 4-5 years ago. Neither Flagyl nor Xifaxan alone ever worked for me. If Cipro + Flagyl ever fails for me I’ll probably need to move on to a biologic.

I’ve never treated pouchitis pain, I’ve just focused on getting the pouchitis under control.

Have you tried probiotics? Not for the pain but to help stop pouchitis. When my pouchitis wouldn't stop reoccurring vsl3 helped to stop it, now I take Visbiome as my probiotic. I've only ever been on two antibiotics for pouchitis.

As for the pain I use cannabis, it also helps me to stop feeling like having to go to the bathroom.

VSL is in an awkward legal status - it turns out they altered the formula and pretended it was exactly the same. The only pharmacy I can find it at any more is Sam’s Club, and I only seek it out because my insurance covers the prescription (double-strength) packets. Visbiome, advertised on the right side of this page, is actually the original formula well-studied under the “VSL3” name.

Rachel: Sorry to hear about your pouchitis.  I just had a bad bout and was reminded of how important the antibiotics can be.  My advice would be to knock out the pouchitis and then start to worry about what to do to prevent it in the future.  I was re-reading notes of mine of 20 years of having the pouch, and there are a number of times where I tried to beat the pouchitis with just one antibiotic like levaquin alone or flagyl, or try a new one, etc.  You might consider going on two at one time (Cipro and Flagyl together are popular), my two go tos are Levaquin and Flagyl.  I hope you feel better soon.

rachelintx posted:

Hello all! I have had my pouch about 15 years. I had my first bout with pouchitis in February and every month since. My question for now (more to come I’m sure) is how long before a doctor will move on to another treatment such as biologics? How long did you stay on antibiotics before trying something else?

It depends on your scopes.  If the antibiotics are not reasonably keeping inflammation in check, you get moved on to biologics quickly.  When is your next scope?

I was put on Remicade and it cleared up almost all of the inflammation I have in my J Pouch.  My only issues now are scattered ulcerations at the J Pouch inlet and the rectal cuff, which are areas of inflammation which are traditionally more resistant to treatment.  My Gi doc is pleased with how the Pouch looks.

By the  way, I was on antibiotics for 20 years before going on Remicade in 2015.  Remicade did not exist back when I started on antibiotics. But I was scoped annually and my scopes by 2015 were showing that the antibiotics, which previously had been keeping the inflammation in a "simmering" state, no longer were and it was becoming moderate.  At that point my GI Docs, both my former one who went to NYC to pursue a job offer there, and my new one as of 2015, recommended biologics.

You need to be scoped regularly to determine the efficacy of treatment.

Rachel now that you have a history of pouchitis/inflammation get scoped annually and make sure you have a Doctor do comparative analysis with recent scopes. This is really, really important in determining treatments for chronic Pouch inflammation. If your scopes show not much inflammation or that your Pouch looks good biological drugs will probably not be indicated.

 

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×