I've had a pouch for over 4 years now due to uc and had my routine pouchoscopy today.
The exam showed that I have a number of ulcers in my pouch. I have the endoscopists official report which I've typed below...

quote:

Findings
Scattered ulcerations in pouch, most of the deep and large ulcers in the distal pouch. The back ground mucosa was not inflammed. The anal anastomsis was well patent except mild erythema and a small ucler in the anal cuff.
Routine biopsies from upper/lower pouch and anal anastomosis.

Endoscopic Diagnosis
Pouch Ulcers

Reccomendations
Follow Up by referreing consultant in 6 weeks to review histology results.

As you can see i'll have the biopsy results in 6 weeks when I have my follow-up consultation. In general I feel ok and have never passed blood. I'm just very concerned that I may have crohns as its always been a big fear of mine. While talking to the endoscopist during the procedure she said that it could be pouchitis.

Basically i'm just posting this up in the hope of some more info/insight during this long and worrying 6 weeks before I get the results.

Thanks for your time.

I have had the same thing for 13 years, feel OK, no blood (also in distal pouch- pattern is top and bottom). Last two years the ulcerations showed up also in my ileum 20-30 cm above pouch. Did they look up into your ileum? If these show up again next year you should ask them to look up into your ileum to see if there are any ulcerations there as well. If the ulcerations are there it could be Crohn's.

However I should note that I had the Crohn's blood test, specimen was sent to Prometheus Laboratories in California and it came back negative for Crohn's and negative for UC. I was told that this does not necessarily dismiss Crohn's as being possible.

My official diagnosis now, after originally being diagnosed with UC in 1972, is "unknown form of IBD."

This message has been edited. Last edited by: DJBHusky,

They didn't look up into the ileum, but it would have made sense if they did.

Thanks for your reply husky, it was very helpful.

I think the general view is that it's when ulcers are in the ileum just above the pouch that it's an indication of crohns. I have ulcers in my pouch and it is put down to pouchitis. Okay, crohns is possible (and, like you, it's a big fear of mine too) but for now I would just work on the basis of pouchitis.

Mike-

Was your ileum checked for ulcerated areas? Note that I had ulcerated areas in my pouch going back to 1995 and my diagnosis had been pouchitis since then. It's been controlled, but not abated, through antibiotic therapy.

It was only the last 2 years that they looked up my ileum and spotted ulcerated areas there as well. It's possible they were there for years (although I recall some clean ileum shots during the late 1990s). But with these symptoms, at the very least the lower part of the ileum above the pouch should be checked when you guys go for future pouchoscopies. It shouldn't be any trouble for your specialist to push up another 20-30 cm and check out the ileum. Plus you will have some comfort in knowing that if the ulcerated areas are confined to the pouch, it very likely is pouchitis and not Crohn's.

And you know what, if it turns out that I have Crohn's, the last 16 years have been far better with the J Pouch than the prior 20 were with a diseased colon, yet they probably never would have done J Pouch surgery on me if Crohn's, and not UC, had been my operative diagnosis in the first place. Which is why my GI is very suspicious and has classified me as a mystery case.

This message has been edited. Last edited by: DJBHusky,

Thanks - I'll ask about that next time I see my consultant. You kind of assume they will have a look at the bottom of the ileum but clearly they don't always do so.