hey there,
Is Pouchitis always there or does it come and go?
Going to see the doc on weds. for a sore butt.
It seems I get nasty pouchitis symptoms for a couple days then it subsides for a couple of days due to the brat diet/codiene combination I use to combat it. Once I stop the drugs(I still take lomitil and cultrelle everyday but no codiene) it is only a matter of time before some food I ate sets off another round of multiple runny/acid buttburn and painful spasms accompanying the poops.
If you had a choice of what antibiotics to try first what would you choose? I never tried any antibiotics yet, only tincture of opium,immodium,lomitil,probiotics. I am sure my doc would go with whatever I push for.
Thanks
David

The first one is usually cipro. The first time I took it was like a miracle drug!

My doc goes with Flagyl first. Always works for me. But this last go-around, I needed more than a month straight on it to lick it. Turns out it was probably NSAID induced.

Pouchitis is only always there if you have chronic disease, if it is treated early, often it is acute only and once properly treated, it is gone. If you have constant symptoms, you should have an endoscopy to rule it in or out.

Jan

It just seems that I have constant symptoms because I have never been treated for it. I have been dealing with it on my own with diet and such.
Hopefully after my doctor's visit on weds. I will start treating it with something...
thanks
David

I can understand your wanting to avoid doctors, but in this case, you probably put it off way longer than you should. But, I am one to talk. I put off getting my chronic cuffitis treated for several years, thinking it was just normal for me.

Jan

Having pouchitis every 2 years since my j-pouch takedown in 2003. After much research trial and error. Here is my advise for my reaccuring pouchitis. For Current pouchitis I take ciprofloxacin 500mg, according to your doctors orders, Complete entirely. No missed doses. Order VSL#3 directly from manufacturer website. (http.www.vsl3.com) $48.50 for 60 capsules, comes refrigerated, directly to your door, overnight delivery. Immediately after completion of antibiotics start VSL #3 with 3 capsules a day, morning, noon, night. May increase dosing after 2 wks if no symptom relief. I have been taking VSL for 3 months now and I have noticed a dramactic difference in my digestion. I wish you all the luck in managing your pouchitis.

I have chronic pouchitis, had to have a scope in October to find I had pouchitis with ulcers. Flagy is drug of choice but I am allergic to it, cipro didn't work but xifaxin works. I also take tincture of opium. I am now trying to rotate xifaxin one week, docycyline one week then one week off. I take culturelle once a day when I am on and off antibiotics. I am much better than I was.

For the butt burn I finally talked the doc into five days of diflucsin (sp). It treats yeast and my butt burn is gone. What a relief after two years. I still use desitin or desitine like stuff just because.

I have also started acupunture and notice some minor changes in the pain and gurgling.

My fatigue is better, I did up my celexa, antidepressant dose, have been taking ferrous gluconate (easy on the stomach) for low ferritin so not sure which of the above helped that. I am leaning toward the celexa. I will post when I decide whether or not the acupuncture is helping.

Good luck - this is miserable since, like you, I had my takedown Nov 2007!!!

P.S. I have also been on entocort, a steroid that isn't absorbed into the system. I was on 3 per day for 3.5 months, am working my way down with a month on 2 per day. I assume it helped with the ulcers and pouchitis. None of the side effects of prednisone.

I have been on Cipro and Flagyl for pouchitis pretty much since my takedown last Oct. I am now on ALign and Cipro ( once a day) and Flagyl ( twice a day). Going to drop down to one Flagyl and then see if I can stop the Cipro. I have been lucky in that the Cipro and Flagyl haven't stopped working and don't cause reactions.

I also take 4 Imodium a day ( 2 in morn and 2 in afternoon) and 2 Pepto Bismol before bed. I really think the Pepto has helped. I don't get up as much at night- down to one time only.

I will try just about anything at this point...