I think Sharon who lives in Paris may be able to help you. Don't quote me...but maybe a Dr. Cohen?Anyway, she will help you.

Thanks Bodoni,
Yes, Dr Zane Cohen at Mt Sinai hospital in Toronto is the number 1 specialist for K pouches in Canada as far as I know.
You can contact the IBD center there that can guide you...Dr Cohen has trained a number of other surgeons in his team for k pouches but I believe that it is Dr Robin McCloud is his future replacement.
Hope that htis helps
Sharon

Thank you very much Sharon!

Hi everyone! I just got on board this forum to break my isolation! Most people don't realize how this health state could deteriorate life and create difficult situation. I just placed my profile. I had a surgery no. 6 revision ( but 1st time with Dr Cohen).

I got many complication and now I am looking for best way to salvage and try to keepp my kock pouch... Not easy as many Dr ( not all though) say it so easy living with a bag!! I disagree with it... And would do still much even with all my problems to Keep the kock pouch! For 18 years I was stable!! A very nasty abusive divorce created the environment to become sick and need surgery. I was sent to Dr Cohen as it seems he is the only one Still doing them! But he is retiring in a near future so not sure what may be next... If I get into emergency situation...

It is not fair to have no one caring for our state in Canada now! I also wonder if anyone may answer me, how cost these surgeries in the US. I also must get some connection with people who underwent similar surgery for emotional support and ideas.

Hi there,

Just wanted to add ... as a former patient of Dr. Robin McLeod at Mount Sinai in Toronto (she performed my K-Pouch surgery in 1986), I recently learned that she closed her surgical practice and will be working at Cancer Care Ontario in a senior VP post. She was a wonderful doctor and will be greatly missed.

Thankfully Dr. Zane Cohen and team are still performing these special procedures.

Here is some contact information for Dr. Zane Cohen: Dr. Zane Cohen
Division of General Surgery

Tel: 416 586-8346
Fax: 416 586-8644
Email: surgery@mtsinai.on.ca

With best thoughts,
Emme

Hi! I just read your post Emmi. I hope they will find replacement for K pouch though. Thanks but I have all the coordinate as my last one was with him.

I think the stenosis is a real challenge as blood vessel shrink and intestine...in some way. As soon I start moving more and shevel a few things around the house I get swollen and not well. Well my abdomen is always a bit swollen since last surgery but it get worst very fast.

When all was well even fro digestion I was blessed. But now I have to be very careful and find solutionwith diet, antistress state, and look for solution to some of my issue. My hernia is getting bigger and more painful, especially when I eat. I must only eat smaller quantity at a time every 4 hour about. Also I am taking more supplement now to get strength. With iron low I felt strange, unable to read, concentrate, dizzy even more.

All the past surgery when I was younger...did had these type of drawback. I did not expected it. Also itd hard to get people to understand and offer help like on lifting stuff etc... I find crohn and these condition, because its not C disease...it does not get the attention it requires, it can be very debiliting when not well and multiple diarhea regularly etc.

Oups...I meant all my past surgery DID NOT had these drawback...as bad...I guess age and number of surgery play a role also...

Thanks. I see Dr. Zane Cohen is on the list. He did my J-pouch. If it ever one day comes down to me having this done, it is good to know he and his team do this procedure......

I live about an hour from Toronto. My surgeon that did my pouch is still in practice. As a matter of fact he has 4 different clinics with many surgeons on staff. There are clinics in Toronto, Mississauga, Oakville and Ottawa. If you are interested look online for Rudd Clinic. Dr. Wm W Rudd

Hi Dave,
Did Dr Rudd do your k pouch in the early 70's?
I had heard about him and his clinic way back then but had never met him...does he still practice? Do they still do the k pouch in his clinics?
Generally when the vavle starts to become inaccessible it can be:
1 A valve twist or slippage. Is it 'sticking its tounge out at you? Does it look like something has changed?
2 The pouch has slipped off of the wall. Rare in later years but it can happen. It can be put back up using laporoscopic surgery.
3 A peristoma hernia. So close to the valve that it is not longer tight. It can cause valve leakage or twisting.
4 A pouch twist (it can twist up into the hernia too...not a good thing at all). This will change the trajectory of the valve and make it difficult to get the tube in.
5 Valve stenosis. The narrowing of the valve makes it difficult to get the tube in.
I am sure that there are other reasons...But that is all that I have got for now.
If you are not suffering and the valve is still continent then you may not need to do anything about it (for now)...But you should have an opac exam where they drip opac into the valve and pouch and then take pictures. Make sure that they film you sitting, standing and laying on either side as well as on the back...even then a hernia may not show but you my see the effects of it.
Since you are a guy I will not mention the girly things...but get it checked out before all of the k pouch doctors retire!
Sharon

Hi Sharon yes he is still practicing at his Toronto clinic. Personally I havent seen him in about 10 yrs, he has 3 other clinics that have 8-10 surgeons in each. Not sure if they still perform K pouches. I am sure it is a nipple slip or twist as I am having trouble but would rather get it checked sooner than later. I also occasionally get a small amount of gas escaping when very full and I move the wrong way. It used to take me less than a minute to empty, now it takes me about 10 mins just to get the tube in. I know Dr. Rudd is well up there in age so not sure how much he is hands on anymore,