I have had recurring pouchitis for many years. Seems to happen more frequently and over the years, I have become resistant to Flagyl (500mg 3x a day). Now I take it with either Cipro or Levaquin.

Question:
- What medications do you take (dosage & frequency)?
- Are there any new treatments or medications for Pouchitis?

I have tried VSL/3 and it made me really bloated. I think it was gas. Anyway, I am hoping to collect some alternative medication ideas here to present to my doctor(s).

I read the recent post about Pouchitis and will do some searching but I'm hoping people could reply to send me emails so I can collect the information, put it in a document and bring it to my next appt.

Thanks in advance!

Mick

Ask about azulfadine. It is an old tried but true drug seldom used anymore. It's inexpensive and dr's don't get any perks for prescribing it like the new stuff.It also doesn't have the nasty side effects that flagyl and cipro have.
It is not an antibiotic, however, Chris's Dr uses it with some good results when patients just can't handle the antibiotic side effects. I am one of those, thankfully I have never had pouchitis.
It won't hurt to ask.

This message has been edited. Last edited by: "FLGF",

Hi Mick,

Azulfadine isn't an antibiotic, it's one of the 5-ASA drugs that is usually used to treat UC.

When I suffered from chronic pouchitis I tried several of the UC drugs including Azulfadine but sadly none of them helped. The regime you are on at the moment (Flagyl and Cipro together) were the only thing that would get me in remission but unfortunately they made me feel sicker than the pouchitis did.

Once I was in remission I had very good success with VSL#3. It really was a life saver for me. I could never take the full recommended dose of 4 sachets per day because it made me feel very bloated and gave me very bad gas pains too. However, I used to start out really slowly with just 1/2 a sachet per day and build up to a maximum of 2 sachets and that would keep me in remission. Eventually after a week or so I was able to ween back down to just 1 sachet per day. I have to say though that my pouchitis was caused by bacteria overgrowth due to not being able to fully empty my j-pouch so perhaps that is why I had such good results from the probiotics.

There are other cheaper probiotics out there that you could try if the smaller does of VSL#3 still gives you problems such as Flora Q and Culturelle.

I'm sure there will be others along soon who can offer more things to try and further advice. Good luck.

Shell

Hello:

I was on Azulfidine for over 15 years after I was first diagnosed with Crohn's. After that time I had a nasty flareup and nothing else worked, methotrexade, 6MP, remicade, and a lot of others. Nothing worked and we decided on surgery, and then UC was diagnosed, and I had the 2 stepper. TD was 7 months ago, still go to the bathroom 15 times a day. I am going to a new GI doctor next week for a new set of eyes to see whats going on.

There is some hope, as he has been highly referred.

Dr. Gil Mehlmed
Cedars Sanai Medical Center
Los Angeles

I did suffer from pouchitis and used Cipro then Flagyl and it worked, but I was on it for 2 months, and hated the Flagyl.

Good Luck,

Craig