Crohns and pouch

Miranda, I am not sure why no one responded to you. There are members here who have Crohn's but didn't know it when they got their j-pouch. It is unlikely you will convince a doctor to give you a j-pouch with Crohn's, but then again I don't know what doctors are like in Denmark.

Hopefully someone will respond to your post.

Steve

Getting a J-pouch with Crohn's can be a reasonable choice, depending on how the Crohn's has behaved over time. The risks are higher than with UC, and not all surgeons will do it. I was turned down by two surgeons for that reason; the third one was fine with proceeding, but partly because he wasn't convinced I had Crohn's.

Thanks a lot for your answers
I think the health system in Denmark is much different than in USA, so they might have different opinions. My doctor has already agreed to do the operation if I want it, so that's no problem. He will actually not discourage me to get the pouch.
Do you have af j-pouch Scott F or didn't you get the operation?
As you say the risks are higher with crohn's (do you know why?), so it's a tough decision. That' why I'm hoping to hear other peoples experiences, but people with crohn's + pouch is hard to find - also on danish websides.
Well, again thanks for anwering me

I've had a J-pouch for eleven years and have never regretted the decision. I do have antibiotic-dependent pouchitis which developed a few years ago, so I need to take antibiotics all the time for that. I may not have had Crohn's as it turned out.

In UC almost the entire affected organ is removed, which is why some surgeons describe a J-pouch as a "cure" for UC. Crohn's can attack anywhere in the GI tract, including the pouch. Crohn's tends to form fistulas. Many people with Crohn's have disease limited to the colon, and many have a fairly mild course. These are the folks who will do best with a J-pouch, but you can't reliably predict who they are in advance. If your Crohn's has always been only in the colon and your anus is in good shape a J-pouch may well be worth a shot.

I'd be cautious. I had a jpouch made in '93 - biopsies and symptoms at that time pointed to Ulcerative Colitis, even though as it turned out, I had abscesses and a fistula that were found when my colon was removed - symptoms of Crohn's. Since then, another fistula, which has been very discouraging.

I have to wonder whether I could have avoided the second fistula had I just stuck with an ostomy, but that's kind of looking up a dead horse's rear end, so ... If you have had no perianal disease such as abscesses, fistulas, etc., you might possibly have a better chance of pouch success.

However, if I knew then what I knew now, I probably would have stuck with my ostomy. There are others out here who have Crohn's and a jpouch, perhaps they have other stories to share...

Thanks for responding Scott and n/a. How did you end up with "n/a" as a username?

Crohn's can be a very badly behaved disease, and the bad behavior is not prevented by an ostomy. People with Crohn's certainly don't need a J-pouch to develop fistulas, though the pouch may be more "delicate" than the original equipment. The bigger question, perhaps, is the decision to do a colectomy for known Crohn's. I believe the general rule in Crohn's is to limit surgery to "only when necessary," since it can't reliably eliminate the disease, like it (mostly) can UC.

Agreed, Scott. If one has Crohn's outside of the rectal/pouch area, having an ostomy will do little if nothing to prevent any bad behavior in those areas.

In my particular case, if I do indeed have Crohn's, it is probably limited to the area where the fistula developed (the ATZ). Perianal disease is easy to recognize and does not bode well for jpouches.

Elmer, n/a are my initials. I was probably feeling surly when I changed my username and added the "/" for no real reason!

Thanks for sharing your thoughts and knowledge with me everyone. I still haven't decided if I want the j-pouch-operation, but it's been good to hear your stories and meanings.

I developed Crohn's right before my takedown, a little over 10 years ago. Remicade cleared up the fistulas that were starting to form in my pouch. My first five years (although I did not realize at the time) went pretty well, with occasional grouchy pouch issues. But scar tissue, stricture at the anastomosis, an R-V fistula, and then fissures ... the second five years have been a downhill ride. Except that my abdomen is a sea of adhesions and disfigurement from scar tissue, and the fact that I did not thrive when I had my temporary ileostomies(one end and one loop, revised once) I would consider going back to an ostomy. But I could not keep barriers on my skin, developed terrible sensitivity to the adhesives, and leaked all the time, creating a palm-sized area of horribly ecoriated skin around my stoma, on top of needing fluids for dehydration and even TPN for malnourisment! I struggle every day, and lately almost every hour, with my pouch, but I was nearly housebound with my ostomy.

Crohn's also gifted me with epischleritis and my arthritis has been getting worse too. At one time I had really thick healthy hair and very good skin, but that is gone. All my labs are normal every three months, but for some reason my body doesn't get that information.

As I was in the process of getting my j-pouch when I developed Crohn's, I am not sure if it would have been an option had the diagnosis been Crohn's when I had my colectomy. However, my surgeon was pretty positive that the j-pouch would go well once we saw the success with my three Remicade infusions.

I too take maintenance drugs, Cipro and Pentasa, and i am now also on Imuran for both Crohn's suppression and transverse myelitis suppression. It is quite possible my TM resulted from the horribly inflamed colon I had removed, and the inflammation slowly engulfed my body until it hit my spinal cord, my eyes, and some of my joints. It took a while to diagnose the TM, however, because it was complicated by a diagnosis of peripheral neuropathy (not diabetic) that began after the months on flagyl but never subsided.

It may take more caution regarding foods, stress, etc.-- but I say go for it. I am one of the 5-10% my surgeon says do not have a good outcome but prefer to live with the pouch than an ostomy.