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6 replies

do you in fact have pouchitis?

R Rebe0505Member
since 2006 operation i have had issues that caused great pain and required meds..i was diagnosed in 08 with anti dependent pouchitis..thus continually on antibiotics,but than i needed to rotate them as my body adopted to each one..this seemed to give me a life again and although not perfect doable..

this past year upon going to see dr. shen in cleveland for an annual check up he said in fact i did not have pouchitis but bacterial overgrowth(my pouch exams always came back normal).. we have a valve between large intestine and small that does not let bacteria back into small intestine ..upon operation this valve is removed..thus some of us really have bacterial overgrowth..not sure why it is not common for everyone ..

ironically the best western medical treatment is antibiotics..

so i have been beginning to explore more bacteria overgrowth ..thus very strict diet like scd and probiotics forever if i go this route because of my body`s continual reaction to missing valve..

if there is anyone else out there with mystery of normal pouch after exam but having pouchitis like symptoms you might want to consider the bacteria overgrowth issue and it is more reason for you to not just get dr. to assume it is pouchitis due to symptoms ..pouch exam should be required to be sure..
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Jan DollarJan DollarModerator, RN, retired
I think this is why there is so much interest in probiotics these days, not just for us, but for all sorts of people. A number of people have posted in the past about how this must be pouchitis if antibiotics help with the symptoms. But, if symptoms return after stopping the antibiotic, you really need endoscopy to see what the real issue is, rather than just throwing antibiotics at it continuously. If there is no inflammation in the pouch (other than the typical minor stuff every pouch has), then you are left with bacterial overgrowth or IPS (irritable pouch syndrome) or both. Plus, antibiotics can help with cuffitis symptoms (did for me), presumably because of the reduction in stool by killing bacteria.

So, I only take antibiotics if my symptoms are acute and severe, then stay on probiotics the rest of the time. So far, things are doing pretty well for me. But, it may also be because of the Simponi I am taking for my arthritis. It is soon to be approved for UC, so it probably helps keep my pouch calmed down.

Jan Smiler
R Rebe0505Member
glad you are doing okay lately jan..

my new diagonsis hasn`t change my treatment unfortunately as i am still on antibiotics for the overgrowth diagnosis..(tried something else dr. shen suggested it was some form of narcotics but it did not work)....and if i go off antibiotics symptoms return pretty darn fast..

so far probiotics alone do not do it for me..and thats a sticky issue in itself like which ones or how many to take!
J jeaneMember
I find this post so interesting as my pouch always seems fine but when off antibiotics I often struggle with the anal pain and burning that antibiotics seem to tame. When I am having a bad day I usually will resort to a day or two of hydrocortisone suppositories followed by Canasa regularly. I can be in rip riaring snsl pain abd a day ir do if hydrocortisone reslly helps. I have been off antibiotics for several weeks now and first time this long in two years but when the anal pain becomes unbearable as it did yesterday I still reach for a few days worth of antibiotics in order to function. I am sure this helps the cuffitis as well and I'm certain the lessening of the bacteria helps my cuff issues.
R Rebe0505Member
jeane as i recall you have a fewothers issues but could your anal etc pain be causes by bacteria overgrowth for same reason the valve being missing?and if so like i said antibiotics still best option for now ..why are you off antibiotics?if it works why do you not stay on them?one of my goals is o try and stay stable as best i can so good days follow good days so to speak..part of what made me crazy ws never knowing from day to day how i was going to be..overall the antibiotics keep me more consistent..like i said it isn`t perfect i can still have some days where i just have to go more and it can be right after just going three times before but i never really know why..but then it seems to right itself..i am sure eating certain things might contribute but sometimes not..generally i feel over all i can plan for events etc. now that i am on antibiotics all the time..is it a great solution ..not really but its what i got and so far it works when i feel it is not i change the antibiotic..
K ktaMember
I've been on Cipro for 9 years now. I used to try to go off, but the pouchitis came back within two weeks at the most. I take 500 mg in the morning and my pouch does well with that. I also take VSL III prescription strength in the afternoon. The few times my pouch flares, I up the Cipro to twice a day and dump the probiotics until I go down to once daily on Cipro. I don't like being on an antibiotic all the time, but I dislike pouchitis even more. To me, it is as bad as UC and I am unable to go anywhere due to potential accidents. I hope Cipro never loses it's effect for me, but if it does, I'll do whatever I have to do (even saying that scares me.)
R Rebe0505Member
looks like you are one of the lucky ones that you can stay on cipro for continual time..most of us get resistence to a antibiotic unless we rotate..

but if that were the case no need to fear..rotating works as well and is not so bad if required..their are lots of them to pick from..

i presently have been on amoxicillan now over 50 days ..decided to just keep going with it myself and see how long i go..i have also been able to last few days knock it down to one 500mg capsule instead of two..but i know things will change at some point they always do..but as long as i have a plan i am good to go...

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