Is it harder to have successful ostomy from failed jpouch then as initial colectomy?

Is it a lot harder to get a successful long term outcome, apart from the sheer trials and tribulations of all those surgeries (!), if one gets a jpouch and, say, later discovers that one has to reverse it and go for a permanent ileo after all, then it is to go straight for a permanent ileo? I despise the idea of a pem ileo vs a jpouch, but am worried that even if the mandatory MRI and cscope that my surgery center would insist on just before surgery "clears" me for a jpouch, that there is now too much confusion afoot.

Let me explain... I was all ready to "just do it" (jpouch for my ?UC) a couple months ago, but got thrown for a loop by my surgical center's second opinion, in a consult, of the biopsy slides that I brought in from my last two colonoscopies. The local pathologists had labeled all of my colon biopsies as mild active pancolitis, and negative for any activity in the part of the ilium reached by the scope, while the pathologists at the surgical center who looked at the same slides said the opposite- inactive inflammation throughout the colon and mild inflammation in the ilium. A cut and dry jpouch decision suddenly became very clouded, and I ditched any surgery decision indefinitely.

I would, frankly, very much like to end this cyclic misery and get a jpouch but I dont know if I can trust the docs anymore, with different pathologists coming up with such wildly opposite conclusions. Anyway, am planning on an MRI/cscope from the surgery center in the near future to try and clarify things- if I can just get a cut and dry ok for jpouch I am all in. If they are wishy washy even after that, then I really would rather keep trying to medicate until I find the ever elusive full remission.

Post Edited (Probiotic) : 2/28/2013 2:50:22 AM (GMT-7)

Do they think you have Crohn's? They thought the same for me for a long time but then I switched doctors and the last GI I had told me she was certain (not 100% certain of course) that I indeed had UC not CD. I trusted her and went for the j pouch. I haven't had a stitch of trouble since. My gut instinct told me too that I had UC. It's in my family....both my sister and my uncle have j pouches so my decision wasn't too tough.

You could absolutely go to an ostomy after a failed j pouch. The odds are in your favor though that you will be perfectly fine. All the best to you.

The markers in my bloodwork were always pointing more to Crohn's. I had the wackiest stuff I was told show up in my labs so my one GI doc was always stumped. I remember telling him that my sister has a j pouch and that I wanted to have the surgery and be done with it and he was totally against it. He thought I had Crohns colitis (crohns only presenting in the colon). Then he sent me to a GI specialist in NYC and he was stumped with me too. I always told them I just knew I had UC but they always thru the Crohn's word around. Finally I hooked up with another GI and she was great. We ruled out CD after some more testing. The only thing I didn't do was the pill cam test because by that time I was so sick and I was in dire need of getting that colon out of me, I just went ahead and scheduled the surgery.

Sending good vibes your way that this comes up as UC so your decision will be a lot easier. Please let us know how you make out.

Whether inflammation is seen in the colon and/or ileum shouldn't have a bearing on the UC vs. Crohn's diagnosis -- ileitis is very common in pancolitis sufferers, called "backwash ileitis". I definitely had inflammation in the ileum, but it was never suggested that that disqualified me for a j-pouch or suggested Crohn's. More important than the *location* of the inflammation is the actual nature of the inflammation. Is it continuous or are there skip lesions? Is the inflammation deep, beyond the mucosal layer? Are there any granulomas in the colon? These are the judgments that need to be made by the pathologist to determine if they believe it to be Crohn's or UC. It is distressing to hear two totally different assessments but either way the information you've provided isn't the info that you need to pass judgment about Crohn's vs. UC. The pathologists' reports should say something like "consistent with ulcerative colitis" or "consistent with Crohn's disease" (or indeterminate).

I personally believe that you shouldn't start the j-pouch surgeries if you can't accept that you might end up with your ostomy permanently. Even if you don't have Crohn's, it's possible for a surgeon to remove your colon and then determine that you aren't a candidate for a j-pouch, for example due to the anatomy and blood supplies just not working.

killcolitis is right that j-pouch excision can be complicated and a difficult recovery, and that an ileostomy formed after a j-pouch will be a little higher resulting in thinner output. However, that doesn't mean it's less likely that your ileostomy itself will be successful -- it just means that overall, going back to an ileostomy from a failed pouch is no picnic. Also, each abdominal surgery creates more scar tissue, possible adhesions, potential for complications, etc.

I will make this short and sweet here as I just got out of the hospital after my 15th surgery.

Just want to say.. going from jpouch to permanant ileostomy is a huge huge huge deal. That surgery is far bigger with far more risk of complications than any of the original jpouch surgeries. DO NOT go into getting a jpouch thinking that if it doesn't work you can just go get a perm ileo. It is a huge deal, a lot more trauma to your body, and a lot of years taken off your life.
Spoken from experience here.

And if there is any suspicion of crohns at all.. I cannot imagine any decent doctor would even speak the jpouch word to you at all.

liz

I think what's very tricky is that there's no real way to diagnose UC. If you have granulatomas then you have Crohn's, but not everyone with Crohn's has granulatomas, so it's not like it's a yes/no test for UC.

I have been "indeterminate" for the entire course of my disease.... at first I was diagnosed with probably UC, then my scope looked patchy, so it was probably Crohn's.... went back and forth. I got a rare skin condition that did have granulatomas, so then I was back to Crohn's, but I guess that's not the same as my intestine having them..... the biopsies of my colon after it was out showed no sign of Crohn's, which was a surprise to my gi.

Afterward I questioned him about whether the j pouch could have been more of an option for me (it was all rushed, and my surgeon pushed me on that making sure I was OK w/the ileo, but that was what my gi recommended). Mostly what he said was that the definitions are really not nailed down, and that if I have UC, it's a "more Crohn's-like variation of UC," where the j pouch would have been more likely to fail for me. He is of the mind that Crohn's is really more like 20 different diseases and UC is more like 10 different diseases, and they just don't understand it all yet.

I went to an ostomy forum (in person) last year and did meet a few other people in ddd's situation w/failed j pouches.... of course, people w/successful j pouches aren't so likely to go to an ostomy forum. There are real risks in whatever path you choose, and you have to weigh the benefits. Some folks who are perfect candidates for a j pouch still choose a bag.

Sounds like you need to get more info on the pathology you have so far, though..... sounds like maybe someone mixed something up, and you want to be very sure that didn't happen before you make huge decisions based on that information.