If surgery is cure for UC, why do we take so much medicine and not go for surgery?

beatUC said...
We are not talking about the "failure" rate, but the CD vs CD diagnosis rate, which as I understand it, is very high.

The post-op CD diagnosis rate is about 10%. Some of those 10% are caught by the pathology that's performed on the colon after it's removed, so some of those people never move on to the j-pouch. Others are diagnosed years and years down the line after having a j-pouch for quite a while.

People forget that j-pouch for Crohn's is not as black and white as we talk about here on the board. There are many people with Crohn's, either who were rediagnosed after surgery or who had their surgery performed when they were already diagnosed, living with successful pouches. The risk of complications or needing meds is certainly higher, but a Crohn's diagnosis is not an automatic sentence of misery with a j-pouch. Just like there is a WIDE variety of experiences with UC (visible in this thread alone), so is there with Crohn's.

Hard as it may be to imagine, a young (and "young" in the hospital usually means under 70) UC patient who is a non-smoker, who is not an alcoholic, who is not overweight, who doesn't have congestive heart failure or high blood pressure, etc is a FAR lower risk surgical patient than average. Absolutely no comparison. Cleveland Clinic has conducted a few longitudinal studies on large populations of j-pouch patients (more than a couple thousand) and I believe the post op mortality rate was less than a tenth of a percentage point.

ladygolfer, best of luck to you. I was very happy with my ostomy and am now very happy with my j-pouch. There is an adjustment period like anything else but the difference between life now and life in a flare is night and day.

"Fifteen to 20% of patients presumed to have ulcerative colitis instead have either indeterminate colitis or Crohn's disease. This misdiagnosis may lead to inappropriate surgical treatment and possible otherwise avoidable complications."

www.fascrs.org/physicians/education/core_subjects/2001/ulcerative_colitis/

Post Edited (beatUC) : 7/15/2014 3:53:13 PM (GMT-6)

but a Crohn's diagnosis is not an automatic sentence of misery with a j-pouch

Disagree with this. I've heard nothing but horror stories of people who have Crohn's in a j-pouch. Known Crohn's is usually an absolute contraindication for j-pouch surgery, the outcomes are so poor.

That's the main reason why I haven't pushed my surgeon for an ileorectal anastomosis, even though I may (not definitely) be a candidate for one. Just would rather have the bag for life than deal with active Crohn's in my rectum and distal ileum.

Surgery isn't always a cure. There are plenty of people who develop Pouchitus after surgery. Surgery is just a more aggressive form of treatment.

Pfft. Don't buy that Cleveland Clinic study. Just doesn't jive with what I've read on forums like this one and with most surgeons' refusal to even consider a j-pouch for Crohn's patients. I once asked my own surgeon about j-pouch surgery out of curiosity, more to get her reaction than anything else; she shot it down in flames instantly.

Put another way; I would like very, very much to not have a bag. Yet I wouldn't touch a j-pouch with a bargepole even if I could because I know it would be setting myself up for incontinence, fistulas, etc. if I went down that path.

Every study I've read on recurrence rates after colectomy in Crohn's agree on one thing: that the chances of recurrences are much higher with an anastomosis than with an end ileostomy. Plus studies only go up to 10 years after surgery: I potentially have another 40 years of life left or even 50 if I'm really unlucky. In ten years, an awful lot can change with IBD, just like it did with me (things went from bad to worse to stuff of nightmares. Story of my life! :-/)

Plus Crohn's patients who have j-pouch surgery usually have to be on meds still. Personally I'd almost rather just have surgery again than go back on all those crappy meds.

This 2013 analysis of restorative procedures in Crohn's colitis paints the best possible picture it can and it still doesn't sway me.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3709952/

Apparently my GI is not swayed either, given that he was strongly discouraging when I asked him about having an IRA last year. Admittedly, British GIs would appear to rather commit hari kiri than voluntarily suggest surgery of their own accord, so maybe it's a cultural thing: I dunno. But I do trust his opinion (as much as I can trust docs' opinions these days), and his lack of enthusiasm for the procedure made me reconsider.

Edit: Sorry for any waffle or rambling: tired... >_>

@Pam - No, not at all. (See sig :p)

I had to have a total colectomy, because my entire colon was involved; my surgeon said there was no healthy tissue to reconnect to. The inflammation in my case wasn't patchy, but continuous. I also had Crohn's of the terminal ileum. Backwash ileitis is typically quite mild and doesn't cause strictures; I had a bad stricture there.

I'm not sure how I got my original diagnosis, 'cos I wasn't told anything about it; literally not a thing. And in those days I was too shy/ignorant to ask my doctor questions. However, I was told it was Crohn's disease and that diagnosis was never changed. Technically speaking, I had ileocolitis - disease of the colon and ileum. As far as I know, though, my disease never went higher than the terminal ileum.

PS: I see from your sig you had the prometheus test. I never had that done, so I don't know what my results would have shown. Personally I wouldn't be happy having my diagnosis determined on the basis of the prometheus test: it's too unreliable. A colonoscopy with biopsies is your best bet; even then, it's sometimes tricky, particularly with pure colonic Crohn's. Here's a link which goes into the pathology of it and is even (almost) readable.

www.nature.com/modpathol/journal/v25/n2/full/modpathol2011120a.html

'Mural' involvement means disease which goes through all the layers of the bowel, btw. UC usually affects the mucosa only, while Crohn's tends to go deeper. But there are exceptions to the rule, and there is a class of Crohn's colitis which has UC-like features. It's not hard to see why doctors get confused sometimes, to be fair.

Anyway, hope this helps a bit!

No problem.

From what I've read about indeterminate colitis, most people go on to get a diagnosis of UC or Crohn's, but quite a few never do. From the surgery point of view, folks with IC fare slightly worse than folks with UC, but do a lot better than those with Crohn's. I think from what you've said you could probably have a j-pouch if you wanted.