2nd step surgery was done about 1.5 months back to start using the pouch.

In these 1.5 months, had 2 episodes of "assumed pouchitis" and was on 1 week course of antibiotics and probiotics.

The 2nd episode has been going on since last 12 to 15 days, surgeon suggested to get scopy done.

Went to do scopy of the pouch last week, but the scopy results came out clear and the report reads, there is no pouchitis, just mild inflammation over anastomosis.

But the symptoms are all similar to pouchitis, even surgeon thought the symptoms were of pouchitis and hence he suggested to do scopy.

Increased freq, sometimes watery stool, leakage, urgency.

Please help, it burns beyond imagination. Life was better with UC was going just once per day

Anita, to clarify, did you receive your biopsy results yet? With new pouches and mild pouchitis, the inflammation might not show up well on the scope. When I went in for my scope (about 2 months afer my takedown like you), the doctor said that there was no inflammation that he could see (he just saw some graininess), however, my biopsies came back positive for pouchitis. I was having all the same sypmtoms as you, and responded (and still respond) very well to the antibiotics. I know there are others with young pouches on this forum that had very similar situations where the doctor said things are clean as a whistle, but the biopsies came back with inflammation for pouchitis.

I'm not sure what to tell you if you biopsies came back negative. However, it sounds like mild pouchitis to me unless it's cuffitis and they didn't biopsy the cuff.

Hope you get some answers and relief soon!

I don't think the doc took any biopsy!!??
What to do now? I am taken off the antibiotics, since the doc and surgeon thought there was no pouchitis and it was just that my pouch was taking some time to adapt to the new plumbing system.

It's depressing to say the least

Hello,
This has happened to me often, however they put me on cipro anyways and it seems to take care of the problem. The Cleveland Clinic (Dr. Shen) is doing a research study on this exact subject. (I just participated in it last week) The study is trying to see if anxiety and depression is linked to this ghostly pouchitis symtpom people are experiencing. Much like IBS they think there is a new thing called Irritible Pouch Syndrome. They recommend antianxiety meds and relaxation techniques, etc. I'm not sure if this helps but I just thought I'd give you the information so maybe you could look into it.

Good luck.
Michelle

here is my take on it..i had surgery in 06..have had chronic pouchitis from day one it seems and my symptoms are much worse than any visuals of my pouch which does not seem to have inflamation..but antibiotics work on the symptoms..so one assumes it is pouchitis because if it were not then antibiotics should not work..my surgeon too thought it was not pouchitis because i had issues right from start that never went away even after a year or more..if its ips not sure antibiotics would work but they try something like elivil for depression as mentionmed by someone else to you......but if antibiotics work tell doctor you want to get back on antibiotics..while you are figuring it out you need to get relief..i was going crazy with same issues of pain,etc beause i was on antibiotics then taken off them..back and forth..start off with one antibiotic that works for you ..see how long you can stay on it with no symptoms..i say this because after getting the doctor to do that and him trying to reduce dosage(which did not work)i discovered my body would adjust to the antibiotic at full dosage after a time and thus i needed to rotate antibiotics..so one needs to go through the elimination of step by step..

but bottom line is getting you pain free etc..believe me i know..

after almost two years of my staying on antibiotics continually i know only that is how i can function with pouch and that is with my going to dr. shen one of the most knowledgeable doctors on pouches..

if you get lucky you will be able to get by on one and do well and maybe even a reduced amount..but go there first..

good luck
rebecca

another thing anita since i have been there and done that..pain,burning,frequency thing...see if you can get perscription for some vicodin to take for burning pain and irritation you feel it might also slow down b.ms..it helped me that year and a half and i still take them if i get irritated,have burning etc. from time to time..i had no negative effects from vicodin and i use simple vaseoline i insert in rectum and around opening works as well as anything else..also i use sitz bath(plastic bowl you fill with warm water and put on toilet instead of sitting in tub..another thing see if you can get some tincture of opium to help slow down bowels..these are all things i used and still do..again get the antibiotic and if it helps stay on it..you know one thing my surgeon did teach me is that many doctors do no exams they just react to symptoms...and i think i understand that now because of people like us who exam does not show severe pouchitis but we have symptoms..treat the symptoms its done all the time by many doctors because they really do not understand everything about this jpouch and why some of us have so many problems afterwards..

rebecca

Anita, probably best to call and check to see if they took biopsies. It would be really surprising if they didn't. My surgeon said that without the biopsy results, the visual from the scope is not enough to rule out pouchitis.

In total agreement with Rebecca though...if the antibiotics work, then stick with it for now. No need to suffer if there is something out there that can help.

AnitaT,

Are you taking Imodium or fiber? If not, you could try those to see if it helps.

3 weeks post takedown, my daughter had the same symptoms. The surgeon did not put her on antibiotics, and she had to wait a couple of weeks for a scope. When he got in there, he said it looked beautiful, and the pathology came back normal- no inflammation at all. Her symptoms seemed to improve immediately. I think there is some merit to the anxiety/depression theory, that ChelleH referred to. By the way, she still has some days with "yucky pouch"; she's still adapting. Hang in there, and try to relax (easy for me to say, I know).