Hi there, I got my pouch in 2002 and have had on and off pouchitis which seems to be getting worse as the years go by. I've just finished a two-month course of Flagyl which didn't help at all. (I can't take Cipro cause it gave me SEVERE pancreatitis) So, my doc gave me a prescription for Biaxin. Does anyone have any experience with this drug? Are there any others that you can suggest? Also, please let me know if there are lifestyle changes that will help... I've already taken steps to reduce stress in my life, but I am constantly exhausted too. Any tips would be appreciated! Thanks!

This is prob a non- question, but what are you doing if anything with probiotics? I'm a chronic pouchitis-er (not sure if thats a word) but I have been able to cut my antibiotic use by using probiotics. Currently VSL#3 DS and for some reason if I take culturrelle with the VSL it seems to work better. I rotate Amoxicillin, Levaquin, Tindamax, and Flagyl. I'm partial to the levaquin. Just the constant inflammation is enough to exhaust you, but have they looked into other causes like low B12, my magnesium level was low, so was my vit C level.
Hope you feel better soon, sorry I don't know anything about Biaxin.
LoriP

Lori,

You use probiotics and antibiotics simultaneously? I was told by my gastroenterologist that if I used VSL3 I would have to go cold turkey on the antibiotics because the antibiotics defeat the probiotics. He told me the goal is to get in remission from antibiotics, and then maintain the remission by taking probiotics. However once I went off antibiotics and on to VSL 3 exclusively, it did not work for me. And I had to go back on the antibiotics.

I have chronic pouchitis for 13 years, kept in check by rotating Xifaxin, cipro and flagyl. I recently added Pentasa because my last pouchoscopy found ulcerated areas in my lower ileum as well as the pouch, and even though my blood test was negative for Crohn's, we decided to treat all of it as if it were Crohn's. And I seem to be better with the antibiotic/Pentasa tandem, although truthfully my symptomology has never been that bad, even though the clinical picture shows chronic inflammation.

With the Vsl I wait a few hours after I take the antibiotics. The culturelle is not supposed to be killed off by the antibiotics. So I use them both. Even on the VSL sometimes they have me take a low dose antibiotic like 250mg Amoxicillin, a baby dose, to lower the "bad" bacteria count. I kind of play it by ear...depending how I feel. I did have to start with a 6 week course of stronger antibiotics to get it into remission. One of my docs ALWAYS wants the probiotics with antibiotics the other one says the antibiotics will kill them off. I wish there was hard and fast rules.....but we all respond differently. I hope you can find your balance.
LoriP

Thanks Lori......I will try the Culturelle in addition to my current regimen. I have been using DanActive and Activia.........but the Culturelle seems like it might be work better with the antibiotics.