Has anyone had this procedure?
Pouch rotation for failed nipple valve.
Original Post
Replies sorted oldest to newest
Yes. My K pouch worked marvelously for over 30 years until I developed continence issues. I have several posts on this forum. I had this procedure done in September 2017, it wasn’t totally successful. In June 2018 repairs were made and everything worked great for a couple of months then leaking issues returned. I’m scheduled for another consult at the Cleveland Clinic on March 18th to see what can be done to repair the valve. I’m going to exhaust all attempts before I give up on my K pouch. It’s ironic how long my initial valve worked so well for so long and now it’s been so hard to get a properly working valve.
Where would you have surgery? There aren’t many surgeons left who will work on a K pouch anymore
My physician is Dr. Jonathan Worsey at Scripps in La Jolla Ca. He just did the same procedure in December successfully.
How long was recovery for you and how long were you in the hospital the first time?
I think was in the hospital for 6 days and then we stayed at a hotel for one night before we made the 7 1/2 hour drive home. The biggest issue was having to keep the catheter in for almost a month and a stapler incision. I had to pack the wound where my old stoma was, as a new one was created above it. I took a month off of work, only because I had plenty of leave and I’ve been with the same company for a very long time.
Thank you Kim...
My stoma has shrunk to the size of the top of my pinky finger but my 24fr catheter slides right in. In a perfect world, I could keep it just the way it is. I just don't know how long this will last before I wake up and the tube won't go in.
Speaking from my experience, if you don’t have excessive stool and gas escaping, I would keep it like it is. The revisions can sometimes result in valves that don’t work properly. There may be way to dilate the stoma with leaving larger catheter’s in for a week or two. The folks with a BCIR use something they call a binky. It’s like a pacifier that you leave in your stoma like overnight etc. you can graduate to a larger size. To keep it from shrinking. As long as it’s okay with doctor, it may be worth a try.
Thank you for the input Kim,the I will consider it!
I had my pouch flipped over by Dr Cohen at Mt Sinai in 2008 after a couple of previous revisions and a failed revision here in France in 2000 where my stoma 'sunk in' about 2 inches into my abdomen. It twisted like a corkscrew and made intubation a nightmare. It took me 5 yrs to go back to Canada and have it fix by Dr C...So I did a lot of damage to the valve. Dr C first tried to change the stoma site and bring it back up to the surface (that worked great for 2 yrs) then I started having problems again (peristomal hernias) and he kept fixing them but eventually, they caused too much damage to the stoma and he flipped my pouch and created a new valve.
My problems were more hernia related (or my pouch slipping off of the wall) after that and I ended up finding a great surgeon here who was Mr Fix-it! He did about 5 different keyhole procedures on me over a 5 yr period. I am now a patchwork of mesh but my pouch seems to be working. Or at least surviving.
Now that both Dr C and my French miracle surgeon are in their 70's and retired, I pray that I never need a revision again...not sure who could or would do it for me!
Sharon
P.S. Yes, the BCIR guys do use a Binky to keep the stoma from closing up. They work up to a bigger size over a period of time if needed.
It has helped a lot of people and is worth the try (anything is worth the try to avoid surgery).
Why is your stoma closing up? Is it just shrinking or is it granulation closing it off?
Sharon