I have been battling pouchitis since early January. The antibiotics I have taken are levaquin, xifaxan and flagyl. Flagyl works best but after going off for 7-10 days the pouchitis is back. I also take VSL#3 and do take it early am and late pm to avoid the antibiotic bothering it.

I went to GI today and he is out of ideas and suggested going back to ostomy. I am not ready for that yet! He set up appointment with my surgeon on Monday to see if he has any ideas. He also suggested Univ. of Chicago or Cleveland for other ideas.

My question is "Are we over-looking anything, Anybody have any other ideas?"

I also should add I was hospitalized on and off for three months in Feb. before a stricture at the ostomy site was found and broke up with ballon dialation. They did all sorts of Chrons testing then and it was ruled out.

Sorry for the long post. Not what I expected at the Doc today.

Jeannie

My GI at Rush tried 10 different meds before we found what worked best (Amoxicillan.. not together), and he never even precribed me Cipro/Flagyl. I have recurrent pouchitis/cuffitis, which means after being off meds for a month, I am back on them for another month!

If this is Chronic Pouchitis, can't it be maintained w/ a low dose of meds?

I've read here that Flagyl/Cipro is taken daily on a low dose to keep the symptoms in control.

I developed joint pain with even the low dose of Levaquin, and the xifaxan did not work at all. I am on low dose of Flagyl now but he seems to not want to keep me on it long term. How long is okay??

I should also change three months to three weeks for the stricture. Opps.

Can you give some other antibiotics a chance?

Amoxicillan

Alinia (which excretes through the bowels, meaining it doesn't go into your blood stream like others, it is fairly new, generic name is: nitazoxanide)


I can't recall what else I've used but those are the two that worked for me.

If you want, type up chronic pouchitis in the search and lots of helpful info should come up.

Has this been dx? Is it officialy chronic pouchitis?

Scope showed pouchitis in January.

Try reading this article. It lists all sorts of different options. It is several years old, so not all the antibiotics are listed:
http://usagiedu.com/articles/pouch/pouch.pdf

By the way, some people can stay on Flagyl indefinitely. You just have to be alert to symptoms of peripheral neuropathy and stop it as soon as they occur.

Jan

Thanks Jan. I scanned article but will read in detail tomorrow. My doctor GI really surprised me today talking about going back to ostomy. I really like my surgeon and he consulted with Cleveland on me in Feb. with the stricture/Chrons ?'s. I am hoping he will treat me for awhile.

I am familiar with neuropathy from my chemo, so I will keep an eye out for that.

I think your doctor is being very premature. There are plenty of people with chronic pouchitis here who aren't even contemplating a reversal. I've been suffering for years now but just manage it as best I can - my quality of life is still good. Okay things deteriorate now and then but I just use the antibiotics when they do then keep of them when things are more tolerable.

I notice one antibiotic you haven't listed is cipro - this is probably a bit more friendly for long term use than flagyl although some people have developed problems from it - also, you are likely to become more resistant to it over time.

One alternative is to stick with the flagyl but alternate it - say 2 weeks on/2 weeks off.

Hi. When I get pouchitis, which I have had several times since my takedown in 2004, my doctor prescribed cipro first,but I could not tolerate it- since then I take flagyl. However, he has me take it for 3 months at a time- twice a day for a month, then once a day for 2 months. Since going off of it last May, I have been fine. I started taking flora-q afterwards- it causes gas at first, but after 2 weeks it worked great. This is the longest time I have gone without pouchitis- and I am very happy. Luckily, I did not have bad side affects from flagyl.

Good luck.

Linda

Hi Jeannie,
I have chronic pouchitis since the beginning. I have no cuff so it's definelty the pouch all seen thru many scopes, my last one being last Thursday. In fact I have had so many that my GI says I can probably do a scope myself! I have my pouch for 6 1/2 years with 2 full remissions, the last one about 2 years or so. I thought I was home free but this last scope showed mild/moderate disease with bleeding ulcers-sucks for me! Anyway, first remision was achieved just using pentasa, second remision was achieved just using xifican. Now, I've gone thru 2 meds-not a happy camper these days. This is my new regime-Pentassa, xifican (upped the dose from 6-8 pills), canassa 1000mg 3 x a day, and protofoam 2 times a day. Go for a follow up in a month. There are other drugs to try before pouch removal. You can be sure I will try anything at this point. I went thru too many surgeries to give this up without a fight. Good luck and let us know how you are doing.
Susan

Thanks for the replies. My surgeon was very helpful. Said I am not ready for surgery now or anytime soon. I have has a rough couple of years. He will take over my care and has some ideas to try. Increase my vsl and add florastor while slowly decreasing Flagyl and see what happens. He has no problem keeping me on antibiotics if I need them. He also said maybe vsl won't work for me and we may need to try other probiotics in the future.

I feel good on the Flagyl and we are taking the kids to Disney World for a week. He trained a surgeon in Orlando and said if I have any problems while there to call him and he will contact the Doctor he trained if I need to be seen.

Jeannie