I am doing well with the 15 inch Marlen Catheter placed inside me by a special radiology technique, that uses a wire and liquid contrast to place it rolled up inside my pouch. If this was safe long term, I might consider leaving it like this. I go back to the Mayo Clinic to talk to the surgeon in May. Nervous, and will keep you updated. This Dr.Eric Dozois, will do a revision to fix my valve. He is Professor of Surgery....and his father did the Kock Pouches before him.
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Is the catheter attached to a constant drainage bag, or capped off somehow? And what do you do to empty the pouch? Why do you think they left the catheter rolled up inside? Has Dr. Dozois done K-pouches before but just doesn't do them regularly? I'd be nervous too, but hopefully since your first pouch worked so well and for so long, things will go well for you. I'm still trying to figure out why so many of us are having problems with our pouches 30+ years out.

Debbie
Dr. Eric Dozois didn't see me yet. Radiology had to do something to get my catheter in so they did it this way so it would stay in and I can pull it out enough to empty it. I flush it out to each time and then push the catheter back in flush to my stomach and use a eye drop cap to insert into the end of the catheter to plug it so it doesn't leak. I have a gauze bandage rolled around my hips and taped in 3 places to hold it in place and wrap the gauze around the tip of the catheter to hold it in place and tie the gauze off at the side of my hip. This is my own eye drop cap that I used to plug the end to put my catheter in to empty it, when my valve was ok. I too was wondering why, it seems a lot of pouches go around 30 years or so, like everything else as we age our bodies change. With women at my age estrogen isn't keeping my skin elastic and tight like in my younger days. So I think it's age related myself. As you age, everything changes, with our bodies including the pouch. My catheter was placed inside by a professional with liquid contrast a wire and a view to see what he was doing. So no one try this on your own or you will perforate your pouch. They put it in like this so it doesn't come out, as I can't get it past the scar tissue and bend. I am 62 years old. I do remember feeling have cramps like I was going to have a baby, I wonder if that was when the valve went or if my pouch dropped down at that time. It would explain the stretching out of my valve and the bend at the end of the valve. I'm wondering if the pouch is hanging by my valve actually. I didn't see on the x-rays that any contrast was by the abdomen, it looked like it was just hanging. So I will ask Dr. Dozois when I see him for the first time. It's been harder to find my valve for about a year before this happened. I do think it's age related changes in the elasticity of everything, skin, muscles, tendons, etc.., just my opinion. I have a lot of faith in the Mayo Clinic. I told them the valve that Dr. Beahrs did seems to be the one that lastest, that I want that one. He was a genius. It's a shame they don't do the Kock Pouch there anymore, as this surgery, is needed. I will do my best to get that point across. I will tell him to go to J-pouch.org and look at the boards. The J-pouch isn't perfect and lots of people would rather have the Kock Pouch, or a way to catherize their J-pouch like we do. I need everyone to write this doctor at the Mayo Clinic in Rochester, MN to get this surgery done there again. We can't afford to let this surgery die out. A lot of surgeons are retiring and they aren't teaching the younger surgeons this procedure. We have to act before, it's gone! Write your surgeons too, to make sure they teach others how to do it. I can't wear a Brooke Ileostomy bag on my body, I am highly allergic to adhesive. It eats my skin right off of me and their are others with the same problem. This surgery is needed!!! J-pouchers go to it too. Be an Advocate....write all the surgeons to keep this procedure going to the next generation. Thank You!!!!

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