Who has had a valve revision?

Vanessa,
I have had many...full blown new valves and revisions on the old one and non of them were picnicks...they are full, open surgery just like the original surgery...no way around it if your valve is twisted, slipped or otherwise injured...
So, even though wearing the indwelling tube may get old, it is still a whole lot better than full surgery if you can avoid it.
Sharon

Oh I totally agree. My scope shows nothing wrong but it is an acute angle. They said they rather just teach me how to work with my body than have surgery. I have to have my Duodenum ablated in a few weeks and after yesterday's cat scan (3rd this year) I am over it all. So for now I think I will ride it out. Maybe it will just be ok after awhile. I just stress out when I can't intubate and panic, etc.

i really with technology was there to be able to fix it through the stoma or just cut around it. I can't wrap my head around my gut being cut open again.

Hi Vanessa,
I got my Kock pouch in 2004 & have had several Kock pouch valve revision repairs & as well during one attempt to repair it my doctor decided it was beyond repair & so he took out the original Kock pouch & gave me another one, so I'm on my second Kock pouch. I was still having problems after that surgery & in November 2011 I had another surgery to repair the valve. This time he made a living color around the valve with my intestines, so I'm hoping for the best. Each valve repair was major open surgery (total of 5 surgeries). I hope things work out for you. - Dixie

The only k pouch surgery that I know of (as of recently) that can be done through laporoscopy is surgical hernia repair...I had my Laporoscopic specialist here do the repairs after having assisted in full k pouch surgery the year before...so he knew what he was doing...he has intervened in my pouch problems 4xs doing various repairs on the abdominal wall, replacing the pouch on the abdominal wall when it fell and untwisting the pouch and retacking it down.
No internal pouch surgery meaning no going into the k pouch that way. For that you have to take the whole pouch down off of the wall and take it out of the abdomen...not fun.
Sharon

I have until about 2 years ago been one of the very lucky k pouch recipients. I have had no problems for over 30 years. My recent problem was diagnosed as my opening to my pouch had gotten to small to insert a tube and there was also some scarring. My doctor had a GI perform a procedure under his supervision to dilate the opening. The procedure had a small complication, but as they went through my stoma opening they did not have to cut me up. The procedure has worked great for a month, but the doctor thinks it may have to repeated every once in a while( Not sure how often). He even thinks he may be able to do it at his office the next time. If there would have been no complications it would have been much easier. I do not know if this procedure might work for you, but you can ask your surgeon. Best of Luck!

I have had my BCIR since May 2007, after about three years developed some scar tissue around stoma opening, doctor tried to repair without cutting me open, just didn't take, had stoma revision this past Feb, he had to cut me open again thru the old scar, but was able to convience him to get rid of those extra two lumps on either side of the scar, so everything works great and I have a flatter tummy, shorter hospital stay than original, no regrets even with new scar.

I had my K pouch done in 1980 and have had revisions in 1998 and 2006. Both times problems began when I had trouble inserting my catheter.

Everyone guesses it is scar tissue. I have a "speed bump" I call it at the entrance of my stoma so I think that is scar tissue for sure. It also feels like my stoma is a suction cup around my catheter at times, like it shrunk, no idea what to do for that, stretching it or leaving a stent in doesn't work anymore, i just had my 2nd pouch scope yesterday in 3 months and the valve is good just on an angle. I guess for now since I just had surgery this local Kpouch surgeon is going to try to do something out of the office to help it. He agrees with my BCIR people that I don't need surgery just yet. Even though it is a pain to get the tube in I can still get it in. Cutting me open now just isn't wise I guess, especially since I have FAP. So when I get back from Miami I will see him and see what's up. I know surely I will eventually need it fixed. I am going to try this catheter and see if it works better than the bullet tip one with 2 holes I can only use now.

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