notes from a k-poucher of 40 years

 

   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.

 

 

Original Post

Thank you, I am a Koch poucher since 1979 & I am going to buy Devrom chewables right away.  I do yoga, walk 3.6 miles a couple of days a week, do weights, etc.  I have had two revisions 1999 & 2000 & agree with you 100% about quality of life.  I have never irrigated either....go figure. 

Thank you for your encouragement!

thank you for the time duration encouragement!!  wow, 40 years

i'm just 2 1/2 years out of k pouch surgery.  so far--aside from a recent valve revision caused by a hernia--my life is greatly improved over a failed j pouch.  i also do yoga, walk, mucho pt exercises, bike, sail and the such.  i do wear an abdominal support when exercising.  and i irrigate w almost every intubation.  so go figure that out.  then again i had terrible pouchitis and other bacterial problems that prompted the good nurses at cleveland clinic to suggest more irrigation rather than less.

also a thanks to all those who contribute to this site because you all have helped me manage various problems along the way.  lets all stay healthy!  janet

to you 40 yearers--i was reflecting on what it must have been like, in the 70s, to go ahead with this surgery.  medical care was different then--better or worse of that i don't know.  more importantly i imagine the k pouch was still relatively experimental or at least unusual .   also you were obviously young.  i was more 'fortunate' in that diagnosis wasn't until my 50s and i'm now 70.  janet

Actually my medical care was excellent.  The K-pouch was at the end of its being experimental, as J-pouches were just being introduced as I had my surgery.  I agree, that the later one could put off any need for these types of surgeries are definitely more fortunate!  I believe that the medical advances for some of those with UC and some other IBD's, that the fecal transplants now being done, will eliminate the need for the surgeries that were both life changing and life saving for us.

Just one of life hack's I learned...but Pepto Bismol Chewable has similar active ingredients as Devrom (Bismuth), and a lot cheaper if you can find a store-brand, rather than buying brand name. Note it causes output to be darker in color and may cause constipation (pudding output).  

Taking the pepto bismol tablets has a potential contraindication as it's made with subsalicylate which is in the aspirin family and may cause some issues for people who are supposed to stay clear of that. From what I read is these tablets are not to be taken more than 6 weeks.  The Devrom tablets have no contraindications from what I've researched.  I'm one of those people who can't take salicylates.  

DGS

Wow! 40 yrs...amazing to hear.

I had my k pouch done at TGH in 1979 by Dr Cohen...at the time it was still considered at a human trial stage in Canada . I was #13! My lucky number.

It was supposed to be a 1 stage but through valve slippage and pouch slippage off of the wall ended up a 3 stage.

Other than another wall slippage  (My body does not create adhesions like others so it just wouldn't adhere) in 1992 I was fine until 1999-2000 when necrosis developed behind the pouch and was nearly impossible to diagnose .

Many complications later I still have my baby fully functional and about to celebrate 39yrs.

Dr Cohen continues to teach the k pouch up until retirement rather recently but the generalization of the j pouch discouraged most future surgeons from taking it up.

The quality of life that this pouch has given me and so many others is incredible ...so sad that the newbies and medical world in general do not get it.

I have 1000 tricks of the trade but never dealt with major odour problems. Probably thanks to my semi-veggie French diet. It is the intake that decides the odour of the output. 

Red meats are a major culprit so I generally keep away from them.

Congrats and stay healthy...maybe all of us pouchers will have a reunion one day!

Sharon 

Had mine done at Mayo in 1975. For 37 years no problems that required a doctor and I stupidly did not even know any doctors who even knew what a Koch Pouch was. Then all of a sudden I couldn't get my tube in, not good! My opening had gotten too small to let the catheter in. The wonderful Dr. Beart , who got to Mayo a few years after my procedure and is now retired, went in and spread the opening out. Dr. Beart was not sure how long the fix would last as it was a very unusual problem, but it has held for 6 years. As I have gotten older I have to empty my pouch much more often and I am sick of doing it in public restrooms. That has been the toughest adjustment for me.

The ileostomy cap sounds really interesting! I am afraid that in a few years there will be no doctors that have any idea what to do with us!

This site was incredibly helpful and comforting when I ran into my troubles!! I remember several helpful and calming comments from Sharon and many others.

 

Thanks!!!!!!!!!!!!!!!!!!!! 

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