Treatment other than antibiotics

Also, (see I knew I’d have more questions 😉) what, if anything, do you take for the pain that comes with pouchitis? 

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.

I agree that probiotics can help. I use a high dose of VSL #3 to supplement the antibiotics, and VSL helped me put off chronic antibiotic use for at least a year.

Do you order the vsl3 yourself from their website or do you get it from the pharmacy with a prescription from your doctor? 

Doc just called in Cipro as the xifaxan was not helping at all. I’m ready to try the vsl3 and hope to stop this pouchitis train!

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.

I order my Visbiome directly off their website, it's very easy and the shipping is fast.

Good luck!

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.

Thank  you all so much for sharing with me. Sounds like antibiotics are the answer until they no longer are. Getting better with Cipro and going to start on vsl3/visbiome. 

My last scope was in May and my pouch looked great. I was pleasantly surprised.  

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.

I went thru every med. Flighting pouchitis for 20 years. I’m now 4 years flare free on Entyvio

good luck and feel better

Same here. Fighted 8 years with pouchitis. Tried everything. Last option was Entyvio. And this drug did it. It took nearly 1 year for complete setup. But now I feel better than ever with my disease.

Congrats, I’m 4 plus years strong