Hi Everyone,
I have pouchitus a lot. I have been off and on doses of Cipro over and over but my doctor never does long term. I have tried Flagyl also it does not work for me. Recently I called him when I had been on but finished a 7 day course of Cipro and the pouchitus as usual had returned. This time he puts me on 750 mg ONCE A WEEK! I am really frustrated. I do good for about 2 days and I am back to pain, night time leakage, because everything is like a water fall going through. I am up this morning at 5:00 A.M. because I keep leaking. I have talked with him about maybe being other problems. He says no its pouchitus. I am going to ask for a daily dose but just wanted to see what you guys think.
Thanks,
Marie

Hi Marie,
My daughter has been using VSL 3 since her takedown. She is doing fantastic...4-6 BM's a day and no problems (knock on wood). Since the antibiotics don't seem to be working very effectively, has your doctor recommended a probiotic at all? It seems to thicken the stool which would help with the leaking, plus help to set up a good gut flora and hopefully get your pouchitis in check. Hope you get to feeling better soon!

750mg of cipro once a week sounds like a complete waste of time.

Try using a probiotic immediately after your antibiotic course to see if this can keep you in remission. Failing that I'd be asking to tail off the course to a low dose every day (or possibly even every other day - but certainly not once a week). Alternatively, you could try a week on/week off type arrangement.

I agree with Mike. If you can't get your GI to work with you, it's time for a new GI.

Jan

Thanks Jan and MikeH,
I have some probiotics I bought from Walmart will this help? Also tomorrow is my weekly dose of Cipro should I take the probiotic the same day or wait until Sunday? I think I am going to try the probiotics if this does'nt work I am calling for a daily dose. No he has never talked probiotics to me. The only thing I am afraid of is I have tried things like Activia and my problems only got worse. Lots of diahrea. Thanks again you guys. It feels pretty lonesome out here sometimes.
Marie

Everything I have read says that probiotics are basically bupkiss until you are in remission from pouchitis. They are strictly for maintenance. There are some here who say they have gotten some positive results with pouchitis, but I am not sure if it is coincidence or what. I'd take the probiotics after the Cipro. Plus, make sure you have a brand that actually has some quality control and research behind it.

Jan

Thanks Jan! I think a call to the GI for a longer course of Cipro is the thing to do from what you are saying. Until I get things straightened out . Thanks for your help. I can always count on you to respond.
Marie

I also could not get rid of my pouchitus. I have been on Cipro (250 mg) once a day for over a year. I am finally at my best. Hope this helps.

Chez

Thanks for all your responses. I have just this week seen my GI doctor again. After I posted that message I was put on Doxcycline and Flora Q. I only continued to get worse. I called him and he changed me to Cipro 1000mg per day. He also told me to start back on the Flora Q. I was in such bad shape I waited a while on the Flora Q. I started it back and in 2 days I was back to diahrea and pain. I stopped the Flora Q again and I am doing great now. When I told my GI about the Flora Q he was really surprised. Does anybody think it might have been just a coincidence? Has anybody else had this problem? My GI is now saying I am probably looking at surgery in the future to get the pouch out. I want to try everything I can. If I reduce the antiobiotics I am back in pain again.
Thanks for you help.
Marie

I tried Flora Q and VSL 3. I feel that Florajen 3 worked better for me.

One thing you mentioned was when I had pouchitis flare up during taking VSL 3, I was told to stop the probiotics until the antiobiotics treatment was done, then resume. I was prescribed flagyl(metronitizol) or cipro.

Did stopping the probiotics until the antibiotic treatment was done work? I was just put on Levaquin 500mg once a day with no end date. My doc suggested probiotics and gave me a box of FloraQ2. The pharmacit told me I should take a probiotic with it. So confused...

The studies I have read, the regiment of antibiotics are, 500mg twice a day of Cipro and the same of metronidazole for 30 days, then probiotics. In the studies, 85% of the patients were pouchitis free at the end of one year.

This demonstrates the importance of receiving a large amount of antibiotics for a period of time, then the probiotics to maintain remission of pouchitis.

Have anyone here received this type of treatment for pouchitis????

I am currently trying to educate my doctor. I have had pouchitis and on Cipro since Jan. this year. It is not cutting it. It has been almost a year since my final take down. Life is still pretty difficult. I am unemployable. Doctor has talked about taking out the pouch. I am one of his two problem childs. At 54 years I don't look forward to carring an external bag for the next 20-25 years.

I have to be an advocate for my own health.