pouchitis

GraceB, I was told the same by my gastro. Long-term use is ok as long as it's the lowest dose possible and you're not experiencing side effects. Once it stops working, you switch to another. It took me a long time to connect Flagyl with my migraines and general lousy feeling, so I stopped taking it. It's a good one for pouchitis, though. I had been taking 250 mg. twice a day. I was also told not to take probiotics with antibiotics. Weird, huh? I think our medical advice is exactly the opposite of that of the general population's!

Being on antibiotics all the time, if they work for you and don't cause unacceptable side effects, is better than chronic pouchitis. It's a compromise, not perfection.

I don't know why he's advising you away from the probiotics, though. They help in pouchitis (especially at preventing it), though they are probably more effective when you aren't on antibiotics.

ya it seems that way

GraceB, you may want to have your iron levels checked if you have severe fatigue. I take a liquid iron from my health food store. Still exhausted, though, but I'm trying. BTW, I am a former Long Islander - Suffolk County. Wonderful place to grow up. I miss being 20 minutes from the Sound.

could you tell me the name of the liquid iron and does it cause constipation? Yes Long Island is a wonderful place but expensive living Thanks Grace

I use FloraDix. I get it in the health food store.

That's the liquid iron I use, too, AllyKat. Someone mentioned it on here - maybe you? I get mine at Mrs. Green's. I don't notice constipation, I still have diarrhea and gas.

chronic pouchitis..no easy answer it seems but for years and i mean years) i was simply rotating full dosages of antibiotics because staying on same always resulted in resistance..

also flagel hardly the only good antibiotic for pouchitis just one of them..maybe its time to change..and yes drs.think in terms of doing the least harm to get results but if you have pouchitis and you need antibiotics than thats what one does..for me it never worked just being on a low dosage of same one continuously.the best drs. with our problem just keep needing to change up with no fixed rules really because there is no just right program..

as for the science in all this right now they have nothing but the antibiotics to work on the problem of pouchitis..and i will take them anytime over my pouchitis!!

i know you have all heard the discussion going on about diet and although it does not seem to be the magic bullet some of us hoped i think it has and may help in the control of the pouchitis or at least in the amount of antibiotics one uses..

in my case pouchitis has come back with diet but at least at this writing shen recommended i take only 500 mgs of tinderbox instead of 1000mg. for 14 days followed by canasa(my pouchitis in pouch low to cuff)..do not think 500woul have worked at all if not on my low carb,low sugar diet..

now after my 14 days of canasa i will see where i go from there but..just thinking if any of you have not considered diet to add to arsenal of controlling pouchitis might be good time o think again about it..

I did change my diet I am slowly adding gluten free products to my diet and I stay away from sugar and try not to eat to many carbs. I do add honey to my toast,tea and any thing I want to add a little sweet too. I am trying very hard to try and figure out what agrees with me. I know we all try very hard trying to find good nutrition for our condition. You are all very helpful in giving tips on what to do on all symptoms that we may have. Thanks Grace

I do want to ask another question. I see that some of you are on the remecade even after j-pouch surgery. Is it helping any of you?