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after seeing shen last week for annual..he said pouch looked good as in past years.. and thought now i might have bacteria overgrowth as the problem not antibiotic dependent pouchitis( one of 100 patients out of 1700 he has!!!).. i have responded well with rotating antibiotics ..rid of intense pain in butt and feelings of not emptying.. ..suffer what i now consider minor inconveniences like need to go immediately after food is eaten,and frequent trips to bathroom throughout 24 hours..

he suggested i try belladona/opium suppositories and cut out sugar from diet(feeds bacteria) and low fiber..sounded like a plan and could taper antibiotics after a bit..and we would see if it kept things under control (which means no unbelievable pain if it goes downhill from inside butt passing b.m..).

today i received my biopsy report from c.c and it said rectal cuff..chronic active cuffitis..u.c in that little freakin cuff!!

i thought any cuff problems i had from time of surgery (06) were gone,died away..

so confusion is maybe all my issues are coming from my cuffitis and never was the pouch or for that matter bacteria overgrowth or both!!..we aren`t treating cuff..he did not have biopsy info when i was there for three days..i will write him.to see what he says but any thoughts on situation..

i know lots of us like jeanne are facing this ongoing circle of its this or that or both or something else..what to do..have some thoughts for jeanne..next thread..

thanks for getting through this

rebe
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You are undergoing the exact same issue I am in..pouchitis and taking antibiotics continually and cuffitis in cuff. My surgeon believes the cuffitis is causing all my issues and the pouchitis in my distal cuff and is really secondary to my cuffitis. He is recommmending pouch advancement surgery with mucosectomy as I have been on rectal meds for over a year with some symptom relief but once I stop them, the cuffitis flares again.


Are you being treated for the cuffitis? Have you had these symptoms all this time since your surgery? You post indicated you were not treating the cuffitis. I do not understand why.

How is bacterial overgrowth handled and are there tests for this?
jeane ,yes we may very well be facing similar issues and we have conferred before on thread but i wrote you another thread and said do not go for any operations until you see maybe shen at c.c or mayo clinic..we both are on antibiotics all the time..i have to rotate was on augmentin like you the longest but i am back to rotating..it went very bad after 7 months with augmentin ..rotating another antibiotic for most part control my most difficult symptoms..i live with the rest but they are not as bad as yours..i just have like a reflex need to go after i eat or drink..which i do and i go frequent times to bathroom throughout 24 hours ..i can manage with these to live but it was this last visit dr. shen suggested i have bacteria overgrowth and not pouchitis..since that comes up clean last 4 years..with 1700 patients he found 100 that have bacteria overgrowth and said it still made sense that antibiotics helped relieve most symtoms for me..but he has some other ideas to try for bacteria overgrowth or for that matter pouchitis..i was going to try one..

however,it was not until i was home that i got my biopsy report about the active cuffitis ..so no past treatment..i wrote him to try to get info on that..or if this is first time i showed cuffitis..my last time i went was two years ago..i definetly had cuffitis first two years as found by my surgeon viewing it..i thought it just died out...

.there is test breath test for overgrowth but dr shen said it really is for people with colons not us jpouchers..not reliable..

what are your cuffitis symptoms and how can you be sure its from cuffitis? its all so simalar for pouchitis,bacteria overgrowth in small intestine..there are a lot of possibilities and.. i know you have muscle pains and maybe antibiotics related?maybe these other approaches often spoken about on site..lactolose,belladona/opium might work plus what ever you take in suppositories for cuffitis..

i know 6 years ago my surgeon tried to treat my cuffitis with standard things i still had my most serious issue unbearable pain in butt when i had b.m felt like i had broken glass..this only is relieved at this time by antibiotics..

please do not go for any operation(last resort)until you get more info..like we could have both things!!your dr. dismisses the pouch as problem and thinks its cuff ..maybe its something else too..he probably does not even know about bacteria over growth..no fault of his..this is just things at the research clinics with dr. shen that they are coming up with..

rebe

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