I absolutly no way never would go to your local surgeon, no matter how "hot shot" he is, as you say he has NEVER done this type of surgery at all before. This is a very complicated surgery. I would think its definitely best for you to get to the toronto surgeons.

However, if you are suffering immensely is it possible that you get a diverting ileostomy immediatlely in montreal. This would buy you time to wait for your Toronto redo. Just disconnecting the jpouch and getting a diverting ileostomy is not a very major surgery.

I agree with Liz. Consider a temporary ileostomy and have the redo done when it's available.

kathy

Boy, what a dilema! I have to agree though, a redo is light years from doing the first pouch and it could easily be a mine field in there. That is where experience really pays off. Still, it is also possible your local guy can do a great job too, if you are willing to be the guinea pig.

To me, getting the diverting ostomy locally makes sense, as it buys you the time you need to wait for Toronto to become available.

But, however you decide, we are here to help if we can.

Jan

Which hospital did you look at? Montreal General Hospital is supposed to have some very experienced surgeons at their colon and rectal surgery center. I cannot find the article now but it stated that Montreal General performed the highest number of colorectal surgeries of any hospital in Canada in 2010. There is also the Jewish Hospital and the Montreal University
Hospital. You can find a list of colorectal
surgeons in Quebec at
Cscrs.ca/en/patients/directory.asp I would
look up the surgeons biographies at each
hospital website. Then call the offices of
the surgeons who interest you. I did that
locally and had great responses. I would not
use an inexperienced j-pouch surgeon. Family
members tell me that J-pouch surgeries
usually have a long waiting list in Canada
unless it is life threatening. I am
originally from Toronto but my brother lives
in Montreal and helped me find this
information. I can try to find more
information, if you want. I enjoy doing research.
Perhaps the Toronto surgeon could recommend a surgeon in Montreal? By any chance are you thinking of Dr Zane Cohen at Toronto's Mt. Sinai Hospital? My sister-in-law worked with him many years ago and spoke highly of him.

Hi, I just came across your e-mail on J pouch .org. I was wondering what you ended up doing as far as rebuilding your j.pouch.
I also had my first surgery in Montreal and suffered for 2 years. I was diverted to a loup illeostomy and am now deciding if I should try a new J pouch. My problem with the first was mechanical.
I had the diversion surgery at the Cleveland clinic.
I would not do any surgery in Montreal as they do not have enough experience with J pouches.
what did you?
Rick

Hi Rickie,

I am currently on the waiting list (supposedly January 2014) to have my pouch rebuilt by Dr. Carole Richard, head of the colo-rectal department at St. Luc hospital.

I have been suffering for almost 5 years. I have not had a good experience with the Jewish General hospital (in Montreal) and I am now banned as I filed a complaint with the hospital ombudsman (who did nothing on my behalf - no letter, just ignored).

My problem lies with the anatomy of my pouch -it is out of whack, floppy and not in the shape it should be (no longer the shape of a "J").

You mention the Cleveland clinic - how are you able to get this surgery paid for? I was told by my surgeon at the Jewish that nobody in Quebec was qualified for the surgery. He agreed to write me a letter so I could get the surgery done outside of Quebec (and have Quebec pay for it). After over two years of continuous requests for the letter, it never came, so I filed a complaint with the hospital ombudsman, which led me to being banned form the Jewish. My file was dumped at St. Luc with an amazing doctor, who has helped me along and will be performing the surgery shortly (I hope).

Incidentally, I sourced Dr Richard on my own, as the Jewish General Hospital failed me again (even though all the colo-rectal surgeons know her).

Where in Canada are you located?

I would be interested in speaking with you to learn what you did and are deciding to do. I recommend Dr. Richard (at St. Luc) as she is the best surgeon that I have come across in Quebec and not as pathetic as the bunch at the Jewish.

Thanks,

Solomin
(Mark)

I'm going to tag on this piece of advice because I can't think where else to post it.

I work as an RN and when I am off work for surgeries I generally am on Long Term Disability. The folks who support me in the LTD office have the ability to contact physicians, write letters, and generally expedite any required procedures as they want me back to work ASAP.

I'm not sure if you work or are covered by LTD through an insurance program but this info. might be good for others who are in the same situation.

The waiting list for j-pouch surgeries here in Vancouver are 6-12 months long.

I originally had my take down and jpouch surgery in 1984 at the age of 17.

Fast forward to 2008, I was experiencing all sorts of bad symptoms, such as difficulty emptying, abdominal pain, nausea, and so forth.

I went to the Jewish General Hospital (Montreal) and after passing several tests, exams and the like, my surgeon at the Jewish determined that my pouch was floppy and distended, and the only way to fix the problem was reconstruction surgery.

It got to the point where I refused to do any more tests as every one supported this diagnosis. I was also seen by other surgeons at different hospitals in Montreal and they all came up with the same diagnosis. My file was reviewed by 7 different surgeons. I even ended up having my file reviewed by a service called "Best Doctors" (covered under my medical insurance at work) by a specialist out of Yale and the recommendation was the same (as paraphrased below):

"Patient is young (44) and still has his life ahead of him. Having him life with a permanent ileostomy would not be right when their are alternatives such as jpouch reconstruction surgery. I recommend he proceed with this surgery."

Initially, my surgeon at the Jewish General was willing to do the jpouch reconstruction surgery, then he wasn't, then he was, then he wasn't. He kept on flip flopping as it was obvious he was uncomfortable performing the surgery (never did one) and he got "cold feet". He was sacred of failure and what it would do to his reputation as for him it was all about "EGO".

At this point, 5 years had passed.It gets complicated when a surgeon (at the Jewish General Hospital) explains that there is no one qualified to perform the surgery in your province (j-pouch reconstruction). It is quite shocking, and as a patient one might not know what to do. I started looking elsewhere and on my own. Typically one tends to trust their surgeons. I was reading jpouch.org extensively and so forth.

This particular surgeon at the Jewish knows Dr. Zane Cohen / Dr. McCleod of Toronto. He discouraged me from contacting them, claiming the Cleveland Clinic (Ohio) was the only place to go. In fact, one of the surgeons on this surgeon's team is personal friends with Dr. Zane Cohen and knows him well. However, my surgeon at the Jewish doesn't speak with this surgeon. This other surgeon at the Jewish was (when younger) one of the leading colo-rectal surgeons in Canada, much like Dr. Zane Cohen is now.

Because we are socialized medicine, the Quebec government (provincial body managing healthcare) will not automatically send and pay for medical services outside of Quebec unless there is a valid reason.

When a surgeon makes a claim as stated above, the patient can apply to the Quebec government requesting care (and payment for services) outside of Quebec provided two surgeons sign a letter indicating that according to their knowledge there are on qualified surgeons locally.

I wasted 3 years with the Jewish General Hospital asking for such a letter and assistance for locating a doctor. No help ever came outside of Dr. Fazzio (Cleveland Clinic), and nobody can afford such healthcare service if insurance does not cover it.

After two years, I started looking for other doctors on my own and a cousin of mine recommended I contact St. Michaels in Toronto.

I did see the head of the colo-rectal department, and after a few visits, I was put on a waiting list (minimum 2 year wait).

Jpouch Reconstruction surgery in my case is considered elective, and therefore not a priority. With surgeons having limited operating room time and Cancer patients taking priority (I agree that cancer patients are more important), the waiting time is quite long (which is understandable).

Leaving the province for major surgery outside of Quebec is quite difficult when one has a family (wife and young child).

While on the waiting list for St, Michaels, I started asking around and I contacted the Canadian Chrohn's and Colitis foundation. I asked if perhaps someone in their organization could recommend a Quebec surgeon.

I received a reply back that they cannot recommend any surgeons, but someone had looked at my case (as explained above) and suggested I contact Dr. Carole Richard of St. Luc hospital (in Montreal).

I did so, and saw her within 3 months (October 2012) . She was willing to take me on as a patient, and put together an action plan where I would hive minor surgery, get a temporary ileostomy (bag), and see if my symptoms go away. If my symptoms would go away, then this would serve to prove that my original diagnosis of needing reconstruction surgery was accurate.

I had the surgery in April 2013. When I met with Dr. Richard following surgery, she explained to me that my pouch was indeed distended and floppy, and that the options available were to stay with the bag or have major reconstruction surgery. She said the decision would be up to me.

Words cannot describe how much I hate living with a bag so I decided to proceed with reconstruction surgery and all its risks. Dr. Richard (who happens to be the best surgeon that I have ever met) was willing to do the reconstruction surgery.

This is where I am today. I am on the waiting list, and I am supposed to have the surgery in January, although realistically I estimate within the next 3 months. 5 years of hell will hopefully be over soon.

It has been a bumpy ride, but I think I am almost at the end of my journey.

Thanks,

Solomin

Hi Mark,
I had my 3 surgeries to build the J pouch in 2008 and 2009,also at the Jewish General in Montreal.After two years do suffering with the J pouch and many different medications my G.I doctor sent me to see Dr. Bo Shen at the Cleveland Clinic.He is wonderful and he tried to help me. I had a sinus(hole) in my pouch which he tried to fill several times.
After several visits and trying different things he thought I should see Dr. Remzi and considering rebuilding.
September 2011 I had the diversions to a loup illeostomy.My life got back to normal after 8 years of being really sick.
But I still have a problem. Even though I am diverted the j pouch is still inflamed.I have been on Budesinide suppositories.
I see and communicate with Dr. Shen.He thinks I should rebuild a new j pouch as my problems with the first one was mechanical.(hole,damaged staples and sitting too low in my body).
I have been afraid to rebuild and suffer again at my age(58).
This week I had a visit with a Dr.at the Cleveland Clinic in Florida.She told me I am young enough and to rebuild as my problem was mechanical.
So now I am seriously considering rebuilding as that is what I went to see Dr. Remzi for 2 years ago and had the first of the 3 surgeries. I have to do something. Rebuild or remove?
I am not ready to take out the j pouch permanently as it is too final.
I heard that Dr.Richard is great! I hope you get to see her soon.Unfortunately I know what it is like in Montreal!!
Rickie

Have you considered a BCIR? It might be a viable alternative and I think it is done in Florida.

I would recommend looking in to it.

Mark

Dr.Shen once mentioned it to me. I was thinking about asking questions about it.I read that it is done in Tampa, but I do not know much about it. I will ask. Do you know anyone who has a BCIR?
Rickie

Rickie, the BCIR is done by Dr. Ernest Rehnke at Palms of Pasadena Hospital in St. Petersburg, FL. I had that surgery in April, 2013 and have had very good results. If you would like to talk with me about it, please send me a PM with your contact information.

Bill

Thanks.First I would like to discuss it with my doctors and do some research.
Do you live near a DR. who can take care of you if you have a problem?
Rickie

I have an excellent GP and a GI who are fully informed about my BCIR and can deal with most medical problems I might encounter with it. If something unusual developed, Dr. Rehnke is just a phone call away. Valuable information about dealing with these problems is contained on the Quality Life Association web page: www.qla-ostomy.org (Medical Information tab). You are wise in doing more research and consulting with your doctors before proceeding with further treatment or surgery.