Hello,

I recall when I had my total colectomy in 2004 for a diagnosis of UC, that my surgeon told me that after biopsies and whatever else was done to my colon, that some disease was found quite high up the large intestine (may have been ileum). They then changed my diagnosis to 'indeterminate colitis.'

Has anyone else had this occur?

My main worry is that I am dreading the discovery of crohns, and if so, what ramifications would this have, as I thought that the j-pouch procedure that I have had is not done for someone with crohns. (I may be incorrect)

Other than that, I have been pretty fit and healthy since the surgery.

Have a good one.

Glen

Hello Glen,
I have had my jpouch two years and now I have a fistula out of the blue. my doctor says that i either have crohns or indeterminate colitis. he says it doesnt mean i will lose my pouch for sure but it is not good. it means i might have colitis that acts like crohns which means possibly fistulas in the future again...and if you get them repeatedly you could need to switch to an ostomy. so i know it is hard not to worry but it is not necessarily the end of the pouch. and, my doctor says even if i get a crohns diagnosis now that it doesnt mean they have to automatically do any surgery or take away a pouch, it just means there is a good chance that down the road sometime there will be problems probably. nothing is certain-- sucks eh?

Hi Niki,

Thanks for the feedback.

Lets hope we stay as healthy as we can.

kind regards

Glen

Glen,

I was in the same boat as you are with the diagnosis of IC. It turns out that the ileum did have some inflammation (called backwash ileitis) and my Dr's were concerned about the same thing. I had a lot of opinions on it and stuff and it turns out that it was actually UC, and that backwash ileitis can occur for a number of reasons and doesn't necessarily mean that the diagnosis should be IC.

I'm glad to hear that you're doing well with your pouch!

Rick

I have Crohn's and a Jpouch. It was a hard road after diagnosis of CD but after getting on the right meds (Humira) I'm doing just fine So it's not the end! Just gotta stay on top of it.
Good luck!

Glen, I too had the indeterminate colitis diagnosis, 9 yrs later not a single sign of chrons for me(knock on wood). It sounds like you are doing fine and please take that for what it's worth, you are fine. Nothing positive will come worrying about the possible ifs, just live life and try to be happy. If something changes with the diagnosis or with your general health, than deal with it then. Good Luck, Scott Mc

Thanks for the responses people.

Made me feel good.

Glen

Hi Glen
I was diagnosed UC in 1991, in remission until 2 1/2 years ago then the nightmare that most on this site have experienced. Now I've been told it could be CC. The surgeon is still prepared to go ahead with a 2 stage procedure in January (elective). I have read recently that results of J-pouch procedures on Crohns patients have been improving (Mayo Clinic?) and that there is less of a reluctance to carry out this procedure. I don't know if this is due to better after-care or better/different drugs.

Hi Glen, Last week my GI told me the same thing. I had surgeries in 2004 and since then I've been doing just fine. I had a bout of pouchitis that was brought on because I had been on a ourse of antibiotics for an unrelated infection and I guess I didn't replace the good bacteria in my gut. He did a scope a month ago and said he found 'lesions' at the end of the small intestine which sould be caused by a number of things (including the pouchitis I had at the time of the scope). The blood test he gave me did not show the inflammation markers he was looking for that would have made him lean towards Chrohns. So I'm IC whatever that really means.

I'm not glad that your GI has told you this but I'm glad I'm not alone.

Suzanne

My story is the same as Kabooms! I too was diagnosed with IC with backwash ileitus. The diagnosis of UC was not confirmed until they removed the colon. Regardless of the confirmation, I too still worry about Crohns. One more week until my take-down after "re-do
surgery! I'm a little nervous, but excited also!
Best of luck to you!

Glenboy,
I had UC and then a couple of years after the j-pouch operation, my GI told me I had Crohn's. I thought he was nuts until I read this article Jan recommended, indicating that it is not as rare as once thought. My pictures (from the scope) looked just like the ones in the article. I take pentasa for the crohn's and have not had a flare since. Knock wood. My arthritis is terrible, but no flare-up of the pouch!
Here is the link to the article:
http://usagiedu.com/articles/pouch06/pouch06.pdf
I hope that helps.
Mav+

New to the board...

I had the first part of the jpouch surgery done six weeks ago today, back in October, with the final surgery scheduled for January.

My story is similar in that I had indeterminate colitis or "chrons colitis" as well. The reasoning for this switch from UC to IC was the way the inflammation in my colon looked, not that the inflammation went beyond the colon into the ileus. Anyways, when I first went to a local surgeon I was told that I wasn't a candidate for the jpouch surgery because of my indeterminate colitis (basically the surgery was only for people with definitive UC). I eventually went for a second opinion at Mayo where after a short consultation with both a gastro doctor and colon/rectal surgeon they both seemed confident I had UC and that the inflammation looked scaly (like Crohns) because of the length and severity of inflammation. The surgeon said that the thinking behind giving a jpouch to someone with IC is changing and that they were becoming more willing to do so (although it still depends on each individual and their situation).

I am unsure whether the same is true for Crohns patients, but people that are told that they have IC should be aware that they are not automatically "out of the running" for a jpouch. Again, it depends on your situation, but you might still be a jpouch candidate. Personally, I was preparing to have a permenant ostomy when I spoke with the people at Mayo. I even put off the second opinion to the last minute because I didn't think I'd hear anything different.

Hope this info/story is helpful to those with IC, and others perhaps.

Also, Mayo's reputation is definitely earned. I couldn't be happier with the results so far and am anxiously awaiting my next surgery in 7 weeks

I'm the opposite to all you guys. I was diagnosed with Crohns last year when I got my ileostomy. Since then they have rediagnosed me with IC and said that I can have an internal pouch becuase IC gets treated the same as UC.

Hey Mav,
Thanks for the link to that information. I learned a lot from it. I was told that I had pancolitis and it is gone now that my colon is in the landfill...Still got this weird feeling that it is not over and something down the road is coming. It seems to happen to alot of people on this site.
Thanks
David
Go Colts