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my answer back from shen after i questioned biopsy report of chronic active colitus in cuff and should we be treating that

..dr. shen still thinks i have bacteria overgrowth not antibiotic dependent pouchitis (pouch has come up clean last three exams)and to proceed to try belladonna-opium suppositories..trying to use them to replace my rotating antibiotics i take every day..and follow no sugar,low fiber diet..

and told me ignore biopsy report about u.c rectal cuff..said i do not have dysplasia..

and if little blood i detect only however when i have fingered myself to put vaseoline inside for itch i sometimes get persists to use otc preparation h suppositories..

i guess i can give this all a try.. diet not necessarily paleo..

rebe
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i guess he thinks it is non symptomatic..thats why i questioned him as to maybe that causing my issues..but he reccommeded nothing other than preparation h as i said..

my worst,debilitating symptoms without antibiotics makes me dead meat.. but with them the worst is gone..so i think because i respond to antibiotics which is not for cuffitis treatment he still maintains we go with bacteria overgrowth...and as i recall now years ago i had all treatment for cuffitis canasa and so on by the surgeon i went to before dr. shen and it did nothing for my worst symptoms..until i stayed on antibiotic continually..(but rotating because the antibiotic became less effective but when recycled worked again..)

i really incourage you to go to c.c or mayo at this point if you can make it happen.. the reason being they just have more jpouch patients as i mentioned on another thread..dr.shen has 1700 right now.. and surgeons know how to operate thats what they do..

please let us know how test goes..i will keep update going..

do you have bleeding?symptoms for pouchitis,cuffitis and bacteria overgrowth appears to have similar possible symptoms..i would not be surprise if i also had ips also which gets thrown into mix..

but i would try everything i could before i had surgery again...

best
rebe
Rebecca,

I had the IBD seriology test to try and rule out UC versus crohn's and it came back UC. Pouch advancement surgery is when the remove the cuff due to cuffitis and basically detach the pouch and drop it down and hand sew it to your anal muscles.

I also take antibiotics daily for my pouch and rapidly decline without them. They have no impact on the cuffitis. Right now I am on cortifoam which seems to be doing nothing for the cuffitis and also actually seems to irritate it more.

Pouch advancement surgery is a very scary procedure as you may or may not end up with another temp ostomy and if they cannot advance the pouch or do a pouch redo, you lose your pouch.

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