I'm sorry, I've had my pouch 9 years and just in June I showed inflammation in the small intestine. They are treating it as crohns. It's so frustrating.

My pouch is also 9 years old and just last year I also was hospitalized with what I thought was raging pouchitis, however, there were ulcers above the pouch and I'm now being treated as Crohn's. It is a bit frustrating. However, there is debate between my surgeon and my GI. Surgeon says dysfunctional pouch, GI says Crohn's. Having inflammation/minor ulcers in the ilium is not necessarily Crohn's from what I understand. Hang in there CedarsFam. Hope your results are good and that you are feeling better.

Blmblp: why dysfunctional pouch? Can you explain?

Hi Bergie77
I believe my pouch is called dysfunctional because it has never emptied well, thus the chronic/frequent pouchitis. I also have a stricture.

BlmBlp: have you ever done a test called defacography or defogram where you sit and they take x rays to see if you have incomplete evacuation or mechanical/dysfunctional problem?

No. I have never heard of it. Thanks for the info. I'll ask about it.

CedarsFam,
Any news on your biopsy results?

The result was inconclusive for Crohns. Wondering what else it could be.

my son is 4 month take down. ulcers above pouch showed in pouchoscopy and video capsule. endoscope and pouchoscopy biopsies do not show crohns. Next test is MRI enterography - but likely he has crohns --clinically it seems he does with weight loss and nausea which he never had until after his take down. My understanding is you can have crohns even if biopsies do not confirm that you do. My son also has prolapse of pouch walls - so we believe there are multiple problems going on.

Still losing weight, down to 96 lbs. on Entpcort, flagyl and Cipro.....had ankle swelling and pain. Thought septic so Rocephin shots in butt but no bacteria grew, wondering if Cipro related. However, bathroom trips reduced, bloody stool less. Yet anemia worse.

Swelling could be due to decreased protein absorption. Have your pre-albumin level checked (a blood test). Sorry to hear you are not getting better. Hang in there.

Thank you, I will request that test on Monday morning at 9 when we see the Dr again.

Cedar Farms have you been tested for C.diff?

I ask because my friend has UC and they swore she had Chron's with ulcers. turned out she had nasty C.dff. Simple stool test will tell..

I had c.diff and a biopsy didn't show it but a stool test did.

I have ulcers above my pouch and the GI and surgeon are saying it could possibly be irritation due to backwash from the pouch or Crohns.
Either way they don't seem to be too worried.

Yes, if you haven't been checked for C.diff, you should be. It is a very simple test of a stool sample. It is nasty and painful, but also entirely treatable. I've had it twice and can attest that many of the symptoms can mimic Crohn's, AND that proper treatment works wonders.

Beterschap,
Gin