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Hi guys, I finally had my appt at mayo for difficult defecation with my jpouch. I previously had the defecogram and anal manometry in Iowa, but the mayo doctors wanted to do an mri enterography, regular abdominal mri and a scope. The mri came back normal and the results of the scope say... “Pre-pouch: focal active ileitis”. “Pouch: minimal active chronic pouchitis without granulomas”. What do these mean exactly? After the scope was done, the doctor said my pouch looks healthy. I did have a mild stricture that was dilated. I feel fine, my only reason for going to mayo was to see if I qualified for biofeedback and to make sure there wasn’t another reason why I have a hard time emptying out. I think they are going to recommend the biofeedback and at home self dilation as I do tend to form a mild stricture often. I guess my main question from all this is, “what does focal active ileitis mean”? Does that mean crohns? My doctor does consider my case “indeterminate colitis”. I’m 33 and have had UC since 14. Things have always appeared to be UC and tests/biopsies point to UC, but I have had a little bit of inflammation in the ileum in the past.



thanks for your help!

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What you describe seem more like the biopsy results, since the doctor said your pouch looks healthy. All pouches have some level of inflammation evident on microscopic examination of biopsies. If there were granulomas present, that would have been an indication of Crohn’s. No granulomas means pretty much nothing, as it does not rule out Crohn’s.

Crohn’s is difficult to diagnose and even more difficult to rule out. Once you no longer have a colon it gets more complicated. But the the main thing is that it does not really matter. Whatever form of IBD you have, the treatment now for what comes up would be based on your signs and symptoms, as the treatment largely overlaps across the IBD spectrum. But, if pouch failure looms, then it becomes more important to know, because Crohn’s may doom a pouch redo or continent pouch.

Hope that helps.

Jan

@Jan Dollar posted:

What you describe seem more like the biopsy results, since the doctor said your pouch looks healthy. All pouches have some level of inflammation evident on microscopic examination of biopsies. If there were granulomas present, that would have been an indication of Crohn’s. No granulomas means pretty much nothing, as it does not rule out Crohn’s.

Crohn’s is difficult to diagnose and even more difficult to rule out. Once you no longer have a colon it gets more complicated. But the the main thing is that it does not really matter. Whatever form of IBD you have, the treatment now for what comes up would be based on your signs and symptoms, as the treatment largely overlaps across the IBD spectrum. But, if pouch failure looms, then it becomes more important to know, because Crohn’s may doom a pouch redo or continent pouch.

Hope that helps.

Jan

Thanks for replying!! You were right, doctor called me today and said the inflammation that was present was essentially “normal” and didn’t indicate anything was wrong. The pouch looked good. So they have officially decided that my issue is all pelvic floor related. Very tight sphincter too. They want me to do either their biofeedback program or if I can’t do that, then pelvic floor pt close to where I live, plus self dilation once or twice a week.

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