Who did your BCIR? Most are performed at the Palms Hospital in Tampa/St. Pete, Florida.

That's right. Dr. Pollack did it about 14 years ago back when I still had American health insurance. I now have German insurance (but also world wide emergency insurance).

Why do you need more surgery on your BCIR? Does it leak? Do you have trouble getting the cath in?

I believe you are at your limit for pouch redos. Certainly, it depends on your own individual small bowel length. But generally, they say two redos (three total pouches) is about the limit. After that, you probably need to revert to an end ileostomy. If you resect too much small bowel, you risk short bowel syndrome and your overall health.

Jan

Why would they need to 'throw out' the pouch to do a redo? 

Unless your pouch is sick (ulcers, Crohns, chronic pouchitis...) they can repair your valve Without removing your pouch and building another one. 

There is a technique that requires only the exact length of the valve (about 8inches of small bowel) and nothing more to redo the valve. 

I have had it done at least twice by Dr C in Toronto. I have had my valve fixed, repaired and replaced as well as my pouch repositioned at least 4 xs.

What they do is to take down the pouch from the stoma opening, cut the afferent limb of the small bowel (the side of the small intestine leading into the pouch) about 8 inches up, flip the pouch over and reattach the incoming intestine to the pouch (where the valve and stoma used to be) and build a new valve out of the 8 inches of bowel hanging off of the other side of the pouch.

Then they just reattach it to the opening in the abdominal wall.

It is a much shorter surgery than rebuilding a new pouch, requires a lot less gut, is less risky and has the advantage of being able to get redone as often as needed (hopefully never).

After all of the kpouch surgery that I have had done, I still have my original pouch.

If your surgeons need to talk to anyone about the procedure have them put a call into Dr Zane Cohen at Mt Sinai hospital in Toronto.

Sharon

Is there anyway you can return to Florida and have them repair your BCIR? If they attempt to fix your valve with a K-pouch - they will destroy your BCIR. Sue Kay will work with you regarding $, etc. Please go back to Florida!

I have written Dr. Rehnke an email... I will also call Susan tomorrow. I think as long as I am admitted through the emergency room, my insurance with cover all expenses. There is also a Dr. Westcott in London who trained under Rehnke. I am trying to see if he can come to Germany. My German doctors have agreed. 

My pouch is fine... but something is wrong with the valve so Sharon is right. No need to throw out the whole thing. I only asked because the Dr.'s here have suggested giving me a K or even a J-pouch. Personally, I don't want either. I am very happy with what I have and the idea of my body (if it's even possible) having to adjust to another pouch is very disheartening.

I didn't think you could get a j-pouch after having a K-pouch or BCIR. I would not deal with this Dr. in Canada. He has done numerous K-pouches on Sharon and they all failed as I understand. Again, if you really need surgery - I would return to Florida. Keep us posted.

Bodoni, 

Dr Cohen is a fantastic surgeon but no surgery succeeds on me. I have Ehler's-Danlos syndrome and that means that my body does not heal like everyone else's does... I do not have the 'glue' that you have to allow my tissues to heal so when they suture me on the inside, 6 weeks later the sutures are reabsorbed but my body hasn't healed yet so everything falls apart...This has been going on since my birth but I wasn't diagnosed until the age of 40. 

My skin closures require staples (4 weeks), stitches (8 weeks), and steri-strips...all kept on for minimum total of 12-16 weeks for my skin to heal...

I cannot put that on Dr C...he has done miracles with what I've got and I still have my pouch to prove it!

But thanks for caring enough to worry.

Sharon

Hi Bodoni, I didn't think so either... I'm still not convinced to be honest though Dr. Heitland says a lot has changed in the last 20 years. Frankly, I don't want to go through such a big surgery again anyway. I just want what I have to work properly.

My pouch was turned over i think to fix a valve unfortunetely. Now i have prolapse and i wonder what could be done to save my k pouch that used to be continent with however other issue like stenosis. 

Could anyone or also Sharon tell me what may be done for prolapse of about 1 inch out...

Does it requires a major surgery and risk of loosing all or any Dr in the list capable of fixing it?? I need help...

Thank you.

I PMed you Myriam...

Talk to you tonight.

Sharon

myriam 

 by prolapse do you mean that the valve is outside of the stoma? Or is it that the stoma sticks out, but your valve remains continent?   The reason why ask is I have the latter condition – – a bulge sticking out from my tummy – – and the problem is a hernia  right next to the valve. I'm scheduled for surgery, which will reinforce  where the hernia is, in December.   I am wondering if you have a hernia or if this is how your prolapse started. Sorry about your condition and I hope your doc is attentive. Where are you located? Keep us posted please. Janet

Thanks. My intestine is olaced right above the stoma so the bump is because of this...not sure if real word is hernia...but now the hole being too large the valve moved up by 1 inxh..they brought it back down and stitched the skin aroung because was leaking...

Hope it was hekp..they hope the skin could rebuilt and close the entrance more but but many questiobs will i still be continent...

If need to refix or stitch the valve under can they do it without majot abdomen openings... i want to save all and i love k pouch...but now i have to look for solution. And which dr...cohen is retired and dr brar apparently is there but.  

Im tired and looding strength...but i pray that a solution may be found...

Thanks.