I've not been active on this site for awhile now. I intend to write a post about my experience once I have more info. It's been lots of trial-and-error and unsuccessful attempts to get my chronic pouchitis in control, and I haven't wanted to write until I had something constructive to share. I hope that time will be soon!

So, I noticed something interesting when I looked through some postings written by people who had opted for pouch removal and went with perm ileos. I found that 20 of the 23 posts I read were by people diagnosed with UC. Of the remaining three, only one was clearly CD, while the other two said they started as UC and had been told that it's more likely to be CD now.

You may have read one of my previous posts in which I explained that I am ready to go to a perm ileo, but my doctors are saying that my UC (of about 15 yrs) actually looks more like CD now and so they don't want to do the perm ileo. They say that I'd end up being on the same meds whether I went perm ileo or stayed with j-pouch. They also want me to start Remicade next week for my chronic pouchitis.

Has anyone else with CD been told that they should not go to a perm ileo? It sure sounds like a lot of people with UC are happy they made the switch.

Thanks!

Lynne

I'm going to bet that is because j-pouch is more of a UC fix then Crohns. If you have full fledged Crohns they don't usually do a j-pouch because the Crohns will just attack the next part of the intestine. Therefore more UC people would be having them reversed.

I'm strongly considering having my jpouch removed after being diagnosed with chronic pouchitis because I don't want to be on drugs for the rest of my life. If it were CD then I'd still be on the drugs, so why remove the pouch and replace it with a bag?

I have no symptoms of CD or UC. One shot a week is a very small price to pay for me to be healthy again. With an ileo, you will not be going to the bathroom 25 times a day, cramping, have accidents, or BB.

I am one of those people who started out with a diagnosis of UC and then had emergancy surgery in 2000 due to a bowel obstruction. The surgeon created the J-Pouch. After 10 years of dealing with pouchitis, anemia, incontinance, steroids and expensive injections, doctors stated that it was morelikely that I had Crohn's. So in 2010 I opted to have a perm ileostomy.

What sounds strange to me is that your drs. don't want to remove the J-Pouch and create a perm. Ileostomy because you would have to be on meds??? I have always been told that Crohn's patients are not good candidates for J-Pouch and usually deal with pouch failure. Either way...you end up staying on all the meds. In my case, I am 11 months out and do not take anything (not even immodium) and I am doing great!! Eating whatever I want and able to sleep at night and function during the day!!! Life is Good. Don't be scared of the ostomy, it is an adjustment and I would be lying if I said it was always pleasant and easy...but all in all it was a good choice for me!!!

I went from UC diagnosis to CD when fistulas kept cropping up. That was my only crohn's symptom and so I opted for a perm. ostomy to get the leaking to stop. After my fistulas were fixed I have been symptom free. I think it has been 3 1/2 years now since my pouch removal and I am happy that my time in the bathroom is short and my bum pain is nothing more than a distant horrible memory. I don't take any meds. Who knows if CD will crop up later in some other way, but I feel it is easier to manage a bag then the pain that occurs from fistulas, fissures, hemrhoids, not to mention the hours spent soaking in baths and on the toilet.

Did your Drs do an endoscopy and find CD inflammation in your small bowel or above? If so, they likely figure you'll need meds to control that and that those meds will take care of your "pouchitis" (or Crohn's). If your CD was in your j-pouch and nowhere else and you removed your pouch I assume it would be more like a case of Crohn's colitis, in which a permanent ostomy is a good option for many patients. From what I understand, CD in crohn's colitis generally does not come back at the anastomosis site (in about 30%) so most don't start off with maintenance meds. I'd speak to your GI for further clarification.
Good Luck!

I opted for the permanent ileo after 2 unsuccessful years of battling chronic pouchitis for the same reason I opted for the jpouch surgery to begin with. When I opted for the surgical route it was because I had already tried remicade, humira, and was lining up for 6 MP and methotrexate but did not want to subject myself to the long term side affects of drugs. It was my hope by having the surgery I would be drug free. Chronic pouchitis however kept me on the drug train with drugs that should not be taken long term either. My goal all along is to be healthy and if I have to poison myself then I'm not healthy.

An interesting theory that was put out by someone here was that people who had their UC in their lower or sigmoid colon seemed to be more susceptible to chronic pouchitis. I wonder if that is actually the case.

Had my first scope after having been on Remicade for a couple of months. My GI says my pouch looks “better but not perfect yet” because there are still a few tiny ulcerations, including one up at the juncture of the j-pouch. My life is more manageable now, but it’s not the extraordinary “I have my life back and I only go to the bathroom 3x a day” stories that I’d heard. The idea of using a rat biologic still creeps me out, but I’m trying to be open to this process and see where the next steps in my journey need to be.

I’m going to continue with another 3 months of Remicade, get scoped again, then reassess. It’s interesting that my doctor, who was against the idea of my going to a perm ileostomy if I had CD, now says my treatment doesn’t hinge on whether I have UC or CD or UC/CD. He says treatment would be the same either way. He says a perm ileostomy is not recommended for CD patients because the disease will just show up elsewhere and I’d end up needing to take the same meds with or without with pouch. It’s also interesting, though, that he changed his tune slightly and is now saying that he doesn’t see his CD ileostomy patients in his office often because they do well, but that nobody understands why that’s the case because it’s counterintuitive (i.e., CD patients shouldn’t have perms).

So, my current plan. . . If my pouch issues aren’t showing as totally cleared up in my next scope (which will be after 5 months on Remicade), then I plan to do the pill endoscopy and decide on perm ileostomy after that. I have appreciated everyone’s feedback so much because it’s given me a window into the consequences of either choice I make. I realize now what a huge deal the surgery is (something I’d conveniently not considered before) and the possibility for problems when getting a Barbie Butt (which would be the way I’d go since I leaked down there when I had my temp ileostomy and also because my pouch should be taken out to avoid further problems from it). Well, I guess there’s no perfect solution. . .Yet another “opportunity” to learn to live with uncertainty.

Best wishes to you all and thanks for your advice and support.
Lynne

CD patients who have Crohn's colitis and have their colon removed (perm ostomy) usually do fine and in about 70-80% of cases the disease does not come back at the stoma sight and they are fine. If they also have upper GI/small bowel disease then obviously the disease will still be there and need to be treated.
If you do a jpouch on a CD patient then it might come back at the site where ileum and rectum are connected and in the pouch. If the pouch is removed, and there's no disease elsewhere in the GI tract the it's hoped it won't come back again (as in the case of most Crohn's colitis patients). It really depends on where your CD is and there is no guarantee but I'd think if remicade isn't putting you into remission and you don't have CD anywhere else you have a pretty good chance with the perm ileo.
Good luck to you.