Hi all,I was just told yesterday that I didn't have UC and that I in fact have Crohn's unfortuantely. My surgeon just did a scope yesterday and my pouch is covered in these little white things that are ulcers and it is quite inflammed. He did take two biopsies and will call me next week with a definate answer but he is sure that it is Crohn's.
I don't really know where to go from here. I want to have a list of questions for my surgeon for next week. Will he look after me or do I need to see a GI in Vancouver? I also have an appt with my Naturalpath for Monday to see what she can suggest.
I just don't know what to do aside from cry right now. My surgeon said something about suppositories too. Any suggestions or comments from your own experience would be greatly appreciated. I'm trying to get to the point of acceptance, hopefully it will come.
Thank you as always for listening.
Sonja

First of all, understand that a Crohn's diagnosis does not mean you will lose your pouch. What it does mean is that the treatment goals change. Instead of trying to cure the pouchitis, you will be striving for sustained remission of Crohn's. It will mean maintenance medication, possibly some that you were hoping to avoid by having this surgery.

There are quite a few here with Crohn's disease of the pouch who are maintaining remission. Here is a link to an excellent article. Scroll down to the section on Crohn's disease of the pouch:
http://usagiedu.com/articles/pouch06/pouch06.pdf

Jan

Did he mention the blood test to verify Crohn's which is done by Prometheus Laboratories in California? Also, did he find any inflammation above the pouch in your ileum? If the inflammation is just in the pouch it still could be pouchitis-

I predominantly see my GI these days since he prescribes my medication, which is Humira.
The news it tough to take, that is for sure. I can sympathize with you, and I'll never forget the exact moment that my surgeon told me I had Crohn's... after all I went through believing I would be "cured".
But, I'm here to tell you that life does go on. I am back in school now for the last 2 years, and will be graduating from college in less than a year. It's not all perfect, but I can handle it most days.
Hopefully you'll get yourself on the right track with some medications that will help you feel better. Good luck.

Thank you for the responses. It's great to be able to come somewhere and be understood and get information. I have started a list of questions to ask the surgeon when he calls. I have also done a search within this website and did a bit of reading which gave me some hope as well as Shelby's reply - thank you.

Sonja,

Just so you know, I also have a pouch and Crohn's disease was suspected because my most recent pouchoscopy in May revealed, when my GI doctor went above the pouch into my ileum, ulcerated areas 20-30 cm above the pouch. A blood test was ordered, sent to Prometheus Laboratories and came back negative for Crohn's and negative for Ulcerative Colitis, despite a 20 year operative diagnosis of UC and colectomy because of it in 1992. My GI doctor told me pouchitis by definition is only in the pouch and he can't explain the ulcerated areas in the ileum 20 to 30 cm above the pouch. He said they definitely are NOT pouchitis.

My Prometheus test specimen is now being examined by another pathologist and as soon as I know the results, I will update the thread called "Blood Test For Crohn's" where you will find more info on this.

My symptomology is not too bad. I am taking cipro and flagyl and Pentasa which is controlling if not curing whatever kind of IBD this is, and while I do have ulcerated areas in the pouch and in the ileum, I don't really have too many problems. However, the fact that there is chronic inflammation (it's been many years now) is a big concern. But my doctors, who are the top doctors in New York City, are a bit puzzled at the moment. Please note that the science in diagnosing these forms of IBD is an inexact one and Crohn's, even when correctly diagnosed, comes in many forms, some of which are relatively benign and go into remission for very long periods of time.

My pouch developed Crohn's-like growths just before takedown. . . in fact they were discovered during step 3 which was to have been takedown! I awoke with my ostomy bag still on, a stoma revision, and an Rx for Remicade!

That was over 5 years ago.