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The J-Pouch Group    J-Pouch Community    Forums  Hop To Forum Categories  Imported Forums  Hop To Forums  Help! Need advice now!    Help-5th year post surgery - are my symptoms getting worse or am I not managing them?
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Posted
Hi all, I had my take down january 2003, and was diagnosed with mild/chronic pouchitis within a year post op. At first I took flagyl monthly or every 5-6 weeks. After a pochitis flare up and this treatment, apart from the annoying side-effects, seem to work. About 2.5yrs ago two things happened, one I discovered VSL3, the other was the side effects of Flagyl increased. I would feel sick after 5 days and it would make diarrohea worse and actually upset my pouchitis. A gastroenterologist recommended 'tindazole' or a 3 tablet 'hit' one-off dosage with a longer half-life so it stays in the blood stream longer, meaning no need to take daily metronidazole (flagyl) and I was like 'yippee!' The first dosage worked, thereafter the recurrance of pouchitis was fast, within less than 2 weeks. This forced me back onto flagyl which I still hate, and it still makes my pouchitis worse. Now I am totally confused and feel I am back to square one, a victim to my symptoms again Frowner !
I am at a loss what to try next ! The VSL3 works to remove BB and slight reduction in frequency but is hopeless if I have chronic symptoms and is SO EXPENSIVE !!! Yikes !! I also have quite a stressful job, which of doesn't help much! Frowner !
After 5 yrs, I feel none the wiser in controlling this and I am getting worried I need surgery again for a stoma ( which I really want to avoid if possible !). I am currently in anal fissure/ 'roid' management mode, boring diet post taking flagyl last week and my syptoms are still eratic. Any advice? I am really needing to re-think my plan of attack on this !


'Never Give up - you can be the master one day...'
 
Posts: 2 | Location: UK | Registered: January 27, 2005Edit or Delete MessageReport This Post
Posted Hide Post
Have you tried any other antibiotics?

My doc has had me try a whole slew of them. I've prob used 10 different antiobiotics for my recurrent pouchitis (I have not used Flagyl/Cipro, he likes to try the others before giving me a hardcore med).

I actually found Amoxicillan to work the best, and I only discovered this when I had a dentist appt to remove a wisdom tooth!
 
Posts: 409 | Location: chicago | Registered: February 28, 2006Edit or Delete MessageReport This Post
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I would try Cipro. It works best for most folks with pouchitis. Also, Culturelle is a good probiotic and not too expensive.

www.Culturelle.com
 
Posts: 995 | Location: Staunton, Va. | Registered: March 04, 2004Edit or Delete MessageReport This Post
Picture of ehbraun
Posted Hide Post
try xifaxin...it worked great and quickly for me, and no side effects.
 
Posts: 96 | Location: state college, pa | Registered: June 01, 2003Edit or Delete MessageReport This Post
Picture of bobolink713
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You might try homemade room-temperature-cultured yogurt as a cheap probiotic:

http://j-pouch.org/eve/forums/a/tpc/f/3251071921/m/2541...391054872#1391054872
 
Posts: 230 | Location: East Central IL | Registered: February 05, 2008Edit or Delete MessageReport This Post
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You've got my full sympathy - I have to take flagyl now and then and hate the stuff. Like you, I am starting to think I am feeling worse on it than I used to (I too was feeling a bit nauseous towards the end of my last course). If you've not tried Cipro then I would definitely give that a go - another advantage (apart from feeling less yucky) is that you can have a drink with it. Otherwise (as others have indicated) there are a few other antibiotic options worth exploring.
 
Posts: 682 | Location: England | Registered: February 03, 2006Edit or Delete MessageReport This Post
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The J-Pouch Group    J-Pouch Community    Forums  Hop To Forum Categories  Imported Forums  Hop To Forums  Help! Need advice now!    Help-5th year post surgery - are my symptoms getting worse or am I not managing them?

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