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
