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Hello. I’m dealing with some chronic Cuffitis that is not responding to any treatment. Recently they wanted to do some more tests to make sure we aren’t missing anything as an underlying cause. In addition to blood and stool tests to rule out infections and check markers, they did a scope with biopsies, and mri enterography with and without contrast of the abdomen and pelvis.  Everything came back normal (except obviously the inflammation in the cuff). Can someone tell me what they might have been looking for that these tests ruled out? Would they show (for example) a fistula or abscess in the area? Is there any other test I should request? Thank you!

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The MRI Enterography is a good test for visualizing thickness changes in the bowel walls, which would be indicative of inflammation upstream of the cuffitis/pouchitis. They are looking for what would classically be called Crohn's Disease, but that highly artificial distinction or classification is now losing significance with modern science. Better to call it upstream inflammation since you have inflammation in the pouch. In my case the MRI Enterography did in fact confirm inflammation at my pouch inlet and just upstream of the inlet.

Because the inflammation I have above the pouch may be from backsplash stool and corresponding SIBO and not Crohn's in the classic sense, they don't call it anything. We know it wasn't there for a full 15 years after I got my pouch, so it's not like I was misdiagnosed. It developed after I got the Pouch. And it seems like this has become a pattern with many pouch patients, especially long term pouches. So the savvy doctors know to always scope up above the pouch and take a peek upstream.

Last edited by CTBarrister

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