I’ve had a K-pouch for 40 years, since 1978 at the Mayo clinic with Dr. Beahrs. My first revision was 28 years later for stoma stenosis in 2005 and followed by 4 additional nipple valve revisions since 2010 and done in San Diego with Dr. Worsey. If I had to have more revisions, I’d do it as much as needed for the quailty of life its given me. The problem with subsequent revisions is the adhesions that form on the pouch and surrounding organs, as they always have to make sure there are no problems there, and old pouches like mine, are much more liable for tearing damage due to the adhesions upon inspection and lifting the pouch. Actually, the traditional ‘kock’ pouch hasn’t been done for years, it’s probably a version of the BCIR, which is a trademark name. The traditional k-pouch has had revisions to it over the years to correct nipple slippage but still called k-pouch. The K-pouch hasn’t even been taught to medical students in decades so this is when we get to educate the non GI docs.
I’m writing to give those of you who may be newer or are thinking of this procedure and are good candidates: worth every revision I needed and will continue until they say it may not work or wake up without it and see a standard ileostomy and hoping by then, one of the newer capping devices for ileostomates, like the Ties Ostomy cure that in a couple of years may be done in the US, essentially a titanium port, a stoma stopper, that allows continence without an external bag. I think I’ve been very fortunate, I’ve rarely used lubricants or needed to do irrigations, which I've always been told to do religiously but have only done with poor dietary choices over the years. I would never recommend that people not do these, just saying I generally don't.
Things I wish I knew to do 40 years ago: Devrom chewable tablets which is an internal deodorant, I apparently never read about it until just a couple years ago and now is as if the odor was no different than the ‘old days’ of normal bowel movements. I’ve used almost every product out there with results that don’t compare to this and no more sprays needed. Oh the embarrassment I could have saved myself! And these pills have been out since the 70’s!
: giving up carbonated drinks: I wish I would have given these up decades ago, and I still miss them but am convinced the additional gas and bloating was in part responsible for those occasional gas(burps) leaks through the stoma that ultimately led to needing additional revisions.
I’ve been a lap swimmer forever and yes, there were some things I had to give up when I had this surgery with a subsequent perianal fistula that took decades to heal but I’ve always considered myself a recreational athlete, not so much now but still an avid swimmer and walker.
It seems remarkable I’ve never met another K-poucher other than reading this site and it truly can be an inspiration for those that are struggling or just wanting to connect, get info and to give encouragement in sharing our experiences.