Has anyone been in this situation before? I was originally diagnosed with UC, and had the 2-stage surgery in early 2006. I had problems with pouchitis and SBO in the past 2 years, but no major problems. In the last month I have been having increasing abdominal pain and fever. After a sigmoidoscopy, my doctor discovered ulcers in my ileum. I'm now waiting for the pathology to come back to confirm that I have Crohn's. I'm so upset, and I feel like I've already been through enough!

I know exactly how you feel....I was diagnosed with UC in 2000. 3 stage op in 2001. I have had so many problems fistulas, abscesses. Now I am having a diversion surgery on the 26th. But still no one can tell if it is Crohns or a leak 50/50.
I would be happy just knowing so I can make good choices.

I know how upsetting it all is. You think you can barely get through UC and now you have been dealt Crohn's.
Hang in there. You can get through this as well.

Stay Strong,
Carolyn

skibunny,

I am in the same situation as you. Read my first post in this thread:

http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/6811044392

They don't know what I have. Blood test checked by two different pathologists is negative for Crohn's. I have ulcerations in the ileum 30 cm above the pouch and my GI said, "that ain't pouchitis, because pouchitis happens only in the pouch."

The only relevance to me of a diagnosis is for treatment purposes. The fact is, I feel pretty good and I am certain what I have now is something different than the disease that destroyed my colon. Prior to my colectomy I had pain, bloody diarrhea, cramps, severe incontinence. I now have none of the above. Haven't had pain or a bloody stool or incontinence in my 16 years with the J pouch.

So now they will do the CTE on me which is where you may be headed as well. CT Enterography or capsule endoscopy to nail down your diagnosis. But if my diagnosis is Crohn's it will not be a big deal to me because what does it change? I have been living with it now for 16 years. Maybe if I get the diagnosis nailed down correctly things will be even better. However I don't believe I have had Crohn's for 36 years because I know for fact that what I had prior to 1992 was a more insidious form of IBD.

One difference from you is I have not had abdominal pain or fever. I feel some mild discomfort occasionally but I would not even call it pain. And no fever.

In any event, you and I are in the same boat. Good luck.

I had UC and colon/rectum removed was clean of crohns. Never went to Gastro dr since 83 until this Apr. Having upper stomach cramping, diarhea and vomiting. Finally gave me a GI dr. who is very good and running all the tests (CT, capsule, endoscope, enteroscopy) and getting approval for my blood test.

The capsule showed high inflammation on the upper half of my small intestines. All other areas are fine. Waiting for biopsies back from enteroscopy. I also have an erosion 1 in in my stoma but the biopsy did not show crohns at least there.

I'll know more later, it's odd to read so many people (in other forums too) getting diagnosed with UC, then crohns, then back to UC, then "they don't know" etc. With autoimmune, we may be creating our "own" inflammation and it is yet to be named? I also have Hashimotos thryoiditis with is inflammation of the gland. Sinus inflammation and lots of other inflammation probs (of course, all the sugar I eat does not help.)

Best to you all - very frustrating not being able to get a firm diagnosis one way or the other.

My heart goes out to you. I too was diagnosed with UC, and it was changed to crohns. I have been having all kinds of issues too. Fisutlas, abcess problems, fissures, everything you can have, I've got. Its a tough disease, but we are tougher. Just try to stay positive because if you don't the only person you will be hurting is yourself. I stuggle daily to keep myself up, and let me tell you, some of those are very hard. I just hope you have a good medical team, and family and friends. Just make sure you lean on them anytime, that's what they are there for, and they are more than happy to help. I don't know what I would do without my mom, she is my gaurding angel. My husband has been the best, and if it weren't for my boys, good Lord, I don't know what I would do. Take care, and just take a look around you, things could be alot worse. I know that is not very comforting, but there are days when that is all I have to hang onto to get thru it.

You are most definitely NOT alone in this one!

I was re-diagnosed as Crohns -- or actually possible Crohns -- a couple of years after takedown.

I was actually going in to return to a permanent ostomy when my doctor suggested probiotics.

I have to say, Imuran and Probiotics have saved my pouch!

I no longer remember how many years it's been. I guess I could do a search, huh?

Try adding probiotics into your day and see if it helps.

Kim