Hello all -- I'm kind of in shock because my long-term GI doc has now suggested that the only plausible explanation for my continuing intractable pouchitis and diarrhea and abdominal pain (I'm 8 years post J-pouch surgery) may be that I now have Crohn's disease in the ileum or higher in lower intestine. I had very bad UC (pancolitis) for years before the colectomy and J-pouch construction. I did not think it was possible to have both UC and Crohn's? I have a scope procedure coming up but it's several months away before he can do it -- does anyone have any insight into this? I'd sure appreciate some guidance on this...

I'm sorry to hear about your situation.

I think that it's very difficult to determine whether or not it's CD or UC if it affects only the large intestine. I've had several tests to determine exactly what I have (most flares were only in rectum and end of large bowel) and I'm still considered "undetermined colitis".

Do they have you on any meds until you can get scoped? I think there are some here who have been diagnosed with Crohn's since their j-pouch surgery and do fairly well with the right medication.

I hope everything turns out ok for you.

I'm in the "indeterminate colitis" group, too. Developed abcesses and two fistulas after takedown. Currently on Remicade with a temp ileo and fistula repair surgery next month. Not sure how it's going yet, but hope to get some good news soon!

Semi- welcome to the club.

Your story sounds exactly like mine.

When I asked my doc the exact same question, he told me that they have a saying at the Cleveland Clinic:

"There's nothing like a j-pouch to bring out Crohn's in a patient."

It sucks BIG time, but it is what it is.

I just had my j-pouch and arse removed 6 days ago, and am recovering at Mom's house.

There are a couple of drug options out there, but I wasn't interested in messing with them after reading the potential side effects...

Best of luck to you.

//Todd

They said it best but you can't not have both as msome of us it turns out to be crohns laters. I guess it keeps those surgeons in buisness sorry had to<<.

I was under the impression that you could have both Crohn's and UC...?

Hi Semi welcome.
Like you I too have severe crohnic pouchitis.I am 6 years post TD and have always had the symptoms of pouchitis since day one after the second surgery.I remember reading my pathology report after my removal surgery for the colon and it said that any attempt at pouch surgery was due to fail in the long run.Why,because they couldn`t make up their minds if I had U/C or Crohns.My GI says it still looks like U/C but deep in my heart I can see Crohns rear it`s ugly head eventually.Then it`s goodbye pouch, hello ileo my long lost freind.

My surgeon viewed IBS/IBD, colitis, and Crohn's as a continuum, and not necessarily separate and distinct diseases ... but rather as different manifestations of the whole inflammatory process. I think this makes sense, since Crohn's and colitis also have non-GI tract symptoms as well.

Often, Crohn's is a delayed diagnosis because it just did not fully manifest previously. 30% of Crohn's cases are Crohn's colitis, and those are only because of certain features that might make it more likely to point to Crohn's than UC. Just because you never showed evidence of small bowel Crohn's before surgery, it does not mean it will never manifest. IBD serologies are not 100% accurate either. There is always overlap between the diseases. They are now thinking that in the future, genetic testing will better define the diseases. But, more importantly, it will define who will respond to which treatments. That is what is more important that what the name of the disease is.

It is basically a roll of the dice and we make decisions based on the information given at the time.

Jan

I've had a rectovaginal fistula that was created during my colectomy 10 years ago. I have an ileostomy currently because of the RVF. When we (my new and very competent surgeon) started the "very long and frustrating" process of trying to repair this fistula, he felt certain that it was a result of surgical technique (which apparently fistulas are a known risk for many surgeries including the vaginal delivery of a baby using manipulation appliances). However, just to make sure Crohn's wasn't involved he ran a specific blood test that became available a couple of years after my colectomy in '97. Prometheus Laboratories Inc. developed this very specific blood test and is available only through the blood workup being sent to them for analysis. If you google "crohn's disease blood test" and select the link for erzinearticles.com it will send you directly to the information.

Bottom line, fistulas can be caused by pathology (Chrohn's or some other disease) or by surgical technique. It's one of the many risks to any surgery. They are extremely difficult to fix because they tend to be resistant to repairs. The more repairs attempted, the more scar tissue, less blood flow to heal the tissue blah blah blah. The anal fistula plug is too long so it tends to pop out. There is a new plug designed specifically for RVF which is not as long so it will accommodate the the thinner RV wall and also has button like features on either side to enable the surgeon to stitch it down better that the AFP. RVFP is my next surgery, gotta go for it and remain positive!!!!

Just to clarify...I saw someone say that if they were diagnosed with Crohn's, it meant they would lose their pouch...well, I have Crohn's, now in remission(yay! Thanks, Humira), and I still have my jpouch. I think it's like a 50/50 shot that you could lose or keep it, but just b/c you have Crohn's does not mean you will lose your Jpouch. There are quite a few ppl. on this board who have CD and a jpouch. I know everyone who was diagnosed with UC fears nothing more than being diagnosed with Crohn's after this surgery, that was certainly the case with me anyway, but as long as you are able to manage the disease, it's really not the worst news in the world. I was devestated when they told me I had Crohn's, but my GI and surgeon were very proactive about getting me in remission fast, and they've managed to do it, and I'm a tough case, so chin up!