Just to clarify on some previous comments regarding K-Pouch and/or BCIR surgery:
K-pouch surgery does not always require the use of “way more bowel.” Also, the conversion of a j-pouch to a k-pouch can in many cases be performed in one surgery. Each person and case is very different — given disfunction, previous surgeries, other med conditions, etc — and everyone should get their own consultation before eliminating options. Dr. Dietz does not look for excuses to perform surgery and I would absolutely recommend trusting his judgement and surgical recommendation — with the understanding that only you know your own expectations and tolerances. A proper risk/benefit analysis requires an honest self-evaluation.
Personally, I’d give anything to have my two years with a wonky stoma and five years I fought my j-pouch back. I spent most of it stuck in the bathroom, or in the hospital, mostly in pain and miserable, at times suicidal. I lost precious time with my son’s at home, negatively affected their growing up, and missed countless special events and holidays with my daughters and grandchildren out-of-state. As for my marriage, I’ll just leave that at “we survived.” Any other personal life is now virtually non-existent. I can’t talk, think or write about it now without crying for what was lost...and don’t know if I ever will. God bless those on this website who shared their experiences and positivity, they helped me realize I still had other medical options! And those options gave me a life back!
As for getting something that no local doc would touch — yes, sometimes true, but I was in the position like many others where local docs are no longer of any help anyway. Going out-of-state was far better than a barely-living slow death at home. In fact, my not understanding how limited the experience was of my local docs was in many ways to blame for much of my adverse experience and poor care from the start. But they didn’t know what they didn’t know and that’s another story for another day. Keep trying, keep pushing, and keep asking questions, use every breath you have :-)
Lastly, if anyone reading this is new to the site, Bill (see above) is one of this site’s (and communities) very best supporters. I appreciate his frequent and informative contributions and referred to them myself when considering my k-pouch (Thanks Bill!) While these surgeries are not widely available, they are performed by many more than 2 docs in 2 states. The website he references for the non-profit organization “Quality Life Association” (aptly named!) also has a helpful list of doctors who perform continent ostomy surgery or are willing to treat a patient with a continent ostomy. (https://www.qla-ostomy.org/med...-continent-ostomies/) It is always changing and not exhaustive, but it is a good place from which to start making inquiries.
—Jen