.....

First let me say I am so sorry and distraught to hear what happened to your pouch! I am so sensitive about the safety of my pouch and valve that I never want anyone messing with it. I can’t imagine how upset I would be if I were in your shoes.

My first choice would be to stay with your original surgeon since he’s the one who created your successful pouch and valve. However, if others can suggest a more affordable surgeon who also has a great track record, than perhaps you would be a good candidate since you’ve had so much success already. My surgery was 30 plus years ago and my surgeon is long gone, so I would be forced to go to someone new (scares me to death)!

Good luck to you. Please keep us posted.

Debbie

Deleted,

I am so terribly sorry for what you are going through. I think that it is our common nightmare to all of us. 

In 1996 I was a pedestrian, hit on a crosswalk, first by a bike that threw me into oncoming traffic that hit me hard and threw me back onto the bike.

The EMT took me strait to neurology ER because I lost consciousness.

Turns out that my head was ok but my lower body really suffered. (hips, knees, ankle and unknown to me, abdomen).

My pouch was perfectly functional but the abdominal wall was swollen, damanged and ended up necrotic. My valve slipped too.

In 2000 I had full out emergency valve reconstruction surgery by a so called expert in k pouches. He was not. The result was horrific. He moved my stoma to a very impracticable spot. 

In 2005  while flying home, my valve hooked onto my tube and tore in the airplane washroom. Emergency surgery followed. 

I was fortunate enough to be on my way to Toronto, my home town, where I had my original pouch surgery done. 

Dr Cohen, my original surgeon took me in, rebuilt my valve (my pouch was fine)  by flipping my pouch over and using 30cms of the afferente limb, and gave me my life back. (he had to repositon my stoma too)

I have had numerous problems since due to my body, my disease and my personal health issues but I do not regret for a second having my valve fixed by its creator. He knows me best, knows how my pouch works, what it can and cannot survive and hope to tweek it.

Personally I would not allow anyone else to touch it if I could avoid it. 

But it is a personal and financial consideration that is different for everyone.

I had considered the BCIR before flying home that year and would have had that done if I hadn't discovered that Dr C was still practicing. 

Good luck no matter what you decide. 

Just one piece of advice. Ask questions. Lots of them. Ask about eventualities like moving the stoma (and to Where?), what happens if it cannot be repaired, what your options are etc. 

The more questions that you ask beforehand the fewer surprises when you wake up.

Hope that whatever you have done is a great success.

Sharon