im in the sad situation, that i just had a pouchoscopy done, and the doc's initial reaction was that i now have chrons - after 10 years with UC...

i have a j-pouch and really love it, and am scared to death to loose it, because i REALLY hated my stoma, so i just wanted to hear if anyone with Chrons have had a K-pouch made?

i truely hope it wont come to that, but right now my stomac hurts like hell, i feel crappy and tired, and do what i allways do - eat! so it doesnt get any better...

lpease someone tell me that it could be done - even if its just to give me hope....

I have a K-pouch and like it a lot. However,
I do not have Crohn's.

I would get a second opinion about getting a K-pouch with Crohn's.

Wishing you the best,

John

I am told that some times pouchitis and Crohn's resemble each other during a scope. Perhaps your pathology report will just show inflammation. I also know that there are new medications on the market now for treatment of Crohns disease. I hope you get some news and relief in the very near future, Cindy.

I agree with Cindy. I have had numerous scopes, camera tests and it sometimes looked like crohns, but the biopsies ruled it out and deemed "inflammation".

Just a note, you'll still have a stoma with a kpouch, but it is smaller and flat compared to the ostomy stoma. With a kpouch, you insert a catheter into the stoma which the feces runs through into the toilet.

A few kpouch members have had crohns diagnosed - your surgeon may allow depending on location, severity, etc. Being in Denmark, you'd have to travel to a surgeon, but others have and it's doable.

Also, there are many with crohns thriving with medications - I also hope you get relief soon.

it's the second time i've been scoped, and both times it didnt really look like pouchitis - but after the first time i was treated with metronidazol - without any effect, and then cipro for 6 weeks, still without any effect..

thats why i got scoped again, and the inflammation had moved since last time, last time it was 4 cm over the pouch, this time it was on the spot right over the cuff, and much more inflamed.....

i know that the k-pouch is a stoma - but what i really had the problem with was the bags, the leaking and the sheer unsexiness of it all....

Hi
I am a k-poucher with a diagnosis of chrons
I had a j-pouch first (1991)
Fistula, chrons diagnosis 2005
K-pouch 5/07

Love my K-pouch but you definitely need to spend some time talking to a surgeon, not many will do it with a chrons diagnosis
BUT
I just had my bi-yearly scope - my GI said my pouch was "pristine" and he even took me off 6mp so I no longer take any meds for Chrons disease.

Good luck in your research

--
katie

ok, now its really official..

I got my final chrons diagnosis today...

im still not on any meds, but my doctores are looking in to what would work for me...

i said that operation is at total last resort - if i can i want to keep my pouch..

i dont tolerate predisone or imurel well, so those two are out...
metronidazol and cipro are uneffective..

so now there talking about some other steroid, with less sideeffects than predinsone ( i cant remember the name) and possibly remicade..

i just have to wait and see... but really, in kinda scared