I'm going in for my 5th major surgery for my Kock pouch repair on November 24th and I notice a thread in the General Discussion forum about J-Pouch success stories. I would love to hear similar experiences from those with successful Kock pouches. - Dixie

Hey Dixie,
You know my answer...It is a sort of success...20yrs of good to very good...then the last 10yrs with bad, worse, better, not so great and every stop in between...for now it is a status quo kind of thing...as long as it holds I am happy.
Still, I wouldn't trade it for all the rice in China.
17 surgeries total on, around and in relation to the k pouch.
Sharon

I have had my k-pouch since 2003 and was lucky to have Dr. Vincent Fazio create it at the Cleveland Clinic. I was 61 years old at the time and had had a failing j-pouch for 8 years.

I did have to have a hernia repaired at the Cleveland Clinic in 2006. Since then, knock on wood, I've had no problems.

I avoid most raw vegetables and fruits (except bananas, macintosh apples, pears, ripe strawberries and ripe melons are all OK). I do eat finely chopped cole slaw which, of course, is raw. Cooked vegetables are easier to digest. I admit I do miss sweet ripe pineapples!

I have to intubate about 5 times a day and usually combine it with urination, which I would have to do that frequently anyway. So that part isn't very inconvenient.

Without reservations, I consider my kock pouch a success.

Lynne,
I love pineapples and I just chew, enjoy and spit...couldn't live without them but have learned never to swallow that kind of fiber, I also do the same with grapefruits and a lot of other fuits and veggie...I also blend or strain.
Sharon

Dixie...my KP has been very kind to me. My surgeon was trained directly in Sweden by Dr Koch (and he married his surgical nurse and brought her to CA). He worked out of a small hospital in Alhambra and trained Dr Launer at Scripps (who in turn trained Dr Worsey, etc.)

Its really surgical skill. But, even with a top notch surgeon, I had 3 valve redos. Never incontinent, just healed shortened so catheter insertion became impossible.

I miss many foods that just don't pass through the cath holes no matter how far down I chew it. But, I chew and spit some fruits so I still get the yummy juice flavor. Of course I only do this in private - ha!

I've had my k-pouch just over 4 years now, no complications with the pouch itself, functions great. That's success to me!

Well Dixie my kock pouch just turned three, four days ago and I consider my pouch a 100% success. In months I went from seemingly healthy to being in the hospital for a month and getting more than 10 transfusions. I had complications with my j-pouch after that and was guided to the late Dr. Launer in La Jolla, Ca who gave me my kock pouch in Nov 2008. Less than a year after my surgery I moved from California to Alaska to finish (start really) school. This summer I floated the Atigun river hunting caribou and dall sheep and due to a raft that was loaded too heavy with gear to carry all of us I hiked 30+ miles, up and down mountians and across tussock covered tundra, in rubber boots, in just a few days. Through all of this the guy I was sharing a tent with had no idea that I crapped through a straw.

I tend to eat what I want and deal with it on the way out. Sometimes results in me being on the toilet for way too long but it tastes way to good on the way in to deny!

what is the difference between the K pouch and the BCIR procedure?

From what I remember the BCIR is based upon the k pouch but the valve and the technique to create it has been altered/modified...they say that they have fewer problems with valve slippage (don't know if this is a fact or not)...I also know that the k pouch valve has evolved as well and that they also do the living colar on...I have a k pouch with a living colar (did not stop it from slipping)...I would not dare to suggest one over the other although I did look into the BCIR at the time...it may very well be a question of availibility, locale, proximity to the doctor and the relationship that you can have with them etc...
Hope that this helps
Sharon

There is one aspect about choosing between a k-pouch and a BCIR that is rarely if ever mentioned: the medical facility at which the surgery is performed.

For the sake of argument, let's assume the results from each surgery are equal in quality of life, complication rate, etc. Let's assume as well that each surgeon is equally talented.

From my point of view, the hospital at which the procedure is performed is very important. No matter how you slice it (pun intended!), each surgery is major. And no matter how talented the surgeon, complications can occur.

To be safe, I would always choose the most highly regarded hospital/medical center, a place where other specialists are at hand to deal with blood clots, strokes, heart attacks, infections, etc.

Before I chose between the two surgeries, I traveled to a BCIR hospital and one where k-pouch surgery was performed.

I see from your question that you, like me, are in Virginia. I traveled to Florida and to Ohio to check out the two procedures, and because of the importance I placed on the availability of specialists, I chose a k-pouch at the Cleveland Clinic.

I am happy I did so. If you want to PM me, please do so and I will fill you in on some of my impressions.

The Kock continent urinary reservoir is a feasible alternative to traditional methods of urinary diversion in properly motivated patients.I heard about this treatment.I have no more knowledge about this treatment.

I am now in Toronto awaiting my surgery with Dr. Cohen on Thursday. Am extremely nervous this time - the most I have ever been. Thanks to you all for your replies. Went through an awful surgery just last September for the same thing & it was horrible. The stitches around my stoma gave out a week after the surgery & there was a huge hole out of which fecal matter leaked for 5 months. In February I went through another surgery. For the first few months it looked like it had worked & then it started leaking again. Wish me better luck this time!

Oh Dixie,
As one Dr Cohen k poucher to another...all my prayers, wishes and hopes for a successful outcome this time and that you may never have to go through all of this again...Please take all of the precautions and be calm, flat and do not do anything that could endanger this surgery.
I know how important it is to you and how much you have suffered for it.
And please, do not forget the nutrition...keep your strength and energy up with suppliments I liked the silicium get taken internally for it capacity to help you to heal).
Hugs from here and please keep us posted
Sharon

I have had my Kock Pouch since May 1978 and my surgeon was Dr. Oliver Beahrs at the Mayo Clinic in Rochester, MN. Dr. Oliver Beahrs was an internationally known doctor and also was President Reagan's personal physician and was flown to the Whitehouse when needed. Dr. Beahrs is deceased now and the Mayo Clinic in Rochester, MN no longer does the Kock Pouch. They do the J-Pouch there now. At the time, I was one of the first 200 patients to have the Kock Pouch and I had no idea the history of my surgeon. I have had no further surgery on my pouch or valve, I had a polyp removed in 2001 during a routine scope. I empty my pouch 2 to 3 times a day, sleep all night and am very pleased with my Kock Pouch and would do it all over again. If I had to have a Kock Pouch done now, I would go to the Cleveland Clinic. I am allergic to adhesive so a Brooke Ileostomy didn't work for me, I had one for 8 months prior to my Kock Pouch. I feel very lucky and fortunate to have the luck and the success I have had with my experience with the Kock Pouch. I would recommend it and I would do it again. I feel blessed that I had Dr. Oliver Beahrs for my surgeon, I only wish I knew then who he was; the nurses there did tell me that I didn't know how lucky I was to have him. Now I understand what they were talking about. I suppose for security reasons they couldn't say back then that he was President Reagan's physician. I am still amazed to this day, that I had a President's doctor operate on me....little me. Amazing...

I have had a Koch pouch since 1982. My surgeon was Dr. Robert Bartlett at the University of Michigan Medical Center. I had my original surgery in Evansville IN in 1978 after suffering from UC for 3 years. I was 23 years old at the time and the appliance was a real crimp in my style. I was an active tennis player and golfer. When I moved to MI I walked into Dr. Bartlett's office and ask for the surgery. I have never had any problems or complications. I eat anything I want even though some foods take a lot of work to remove or they just stay for a while. I only empty my pouch twice a day, first thing in the morning and before bed. I am amazed at the capacity. I'd be happy to share some secrets for moisture control on the outside. Would like to communicate with others with Koch.