Back to some of my "stupid questions"...
Is pANCA screening common before colectomy? I see this study indicates a high correlation between high pANCA levels and pouchitis later. Just wondering if this is useful info for "fence sitters" to help decide between a permanent ileo and a pouch.

I realize that such a decision would be complicated by the fact that there's a huge difference between simply getting (possibly easily treated) pouchitis, and having chronic, refractory pouchitis.

http://gut.bmj.com/cgi/content/abstract/49/5/671

It may be. It is one of the IBD serologies, but I am not sure how widespread their use in diagnostics are at this point. It is only fairly recently that they have been available at local labs and it was not too long ago that it was proprietary tests done at only one lab in the country- Prometheus.

However, you would need to be in the high category of positive to have the risk of 56% for chronic pouchitis, according to the study you showed. Plus, this was not a huge study, so global conclusions cannot be made yet, but it was large enough to make some connections. So, this would be a good thing to discuss with the surgeon.

Factors that can increase your risk of pouch failure include chronic pouchitis, advanced disease, extraintestinal symptoms, intraoperative events, and post operative complications, so pouchitis is only one factor to think about. This link is to a Cleveland Clinic article that is very comprehensive and I think will answer most of your questions. Unfortunately, current technology is not yet at the point to be able to predict with certainty who will wind up with a failed pouch, and even those with Crohn's are not guaranteed to develop pouch failure. It is a gamble and you just bank on odds in your favor.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1360119

Jan

Thanks, Jan- and helpful paper.

I asked my surgeon this as I was warned by my GI that I would be at high risk for pouchitis due to my Panca numbers. My surgeon, who is a researcher, did not have many nice things to say about any of the Prometheus research or tests and explained how flawed they were. I have had my pouch for over six years and have not had pouchitis yet.

Sue

Thanks, Suebear, good to know. By the way, good to see you post your experiences also at the healingwell site.

One other thing I failed to mention is that there seems to be an assumption that the end ileostomy is a guaranteed salvation if the pouch fails. While it is true that most people are able to adapt to it enough to be quite satisfied with their life, the satisfaction rate is pretty similar to that with the j-pouch, meaning about 10% are very unhappy with their results. This can be from a variety of things, ranging from psychological problems to physical rejection of the external appliances. We have one member here who suffered with burning skin for a couple of years before switching insurance providers so he could seek out a surgeon who could give him a continent ileostomy. Other members have serious issues with insurance coverage for ostomy supplies.

While these are not life threatening issues, they are definitely food for thought when making your decisions. But, again, most people who opt for an ileostomy are quite satisfied.

Jan