Surgery - not certain what to do

If you know you cannot afford surgery in the US, what is the consult for? Is it to find out if surgeons who do this reconstruction often would agree that you should not go for it? I think Cleveland Clinic in Ohio will do consults by phone for certain types of issues. If I were you I would start there before spending lots of money in the US when you can't pursue treatment here.

And if the US surgeons say "sure reconstruction is a good option" What then? If you can't have surgery here, you are in pretty much the same situation as now - having to wait several years and or accept a surgeon without a lot of experience.

Are you sure politics and egos are the only reason you are being advised against reconstruction? 7 surgeons is a lot to be arbitrarily telling you take the easy way out. I would push for more details about why they believe reconstruction isn't an option for you. If none of the 7 can give you any info beyond wait times and ease of surgery, then perhaps you need to pursue more thorough review by the hospital or health care system.

In Quebec, if there are no surgeons qualified to do a specific surgery, the surgeon looking after you has to right a letter on behalf of the patient to the provincial medical board so the patient can get reimbursed for surgery outside of the province.

My surgeon claimed that there were no qualified surgeons for jpouch reconstruction. Following that statement, for 2 years he did absolutely nothing - no help locating another surgeon and no letter (which I requested several times); After 2 years of frustration with this jerk, I filed a complaint against him with the hospital ombudsman. Hence politics - you filed a complaint so screw-you; now we won't touch you; I wasted 2 years with this guy; No letter ever came about (which he has to write, not me), no recommendation for surgeon elsewhere; heck he doesn't even talk to the head of the colo-rectal unit as they hate each other; so I got screwed with no cooperation and little choice but to file a complaint. He knows all the surgeons across Canada too, so certainly he could have recommended one in say Toronto

Solomin,
Some of us are not text book cases where our surgeons can be 'good enough', go in, do their jobs and never have to see us again...some of us are repeat cases with unusual complications where 'good enough' is not enough...and our surgeons, those 'good enough' doctors...are at a loss for what to do. So they fluffle, muffle, shuffle our files to the bottom of the pile and pretend that they do not know us if the cross us in the hallways....They avoid call backs, ignore pleas and generally treat us like something embarassing stuck to the bottom of their shoe. We get black-balled.
I have friends and family who have gone in for abdominal surgery and come out with an end ileo and are thrilled because their surgeon sold them a bill of goods...'I did my best but...', 'If not, you would have died'...'There was no other choice'...And they are excited to be alive, never knowing that other options exist, j pouches, k pouches etc...happy to show off their bags to friend and foe and say, 'looky what I got!'...and I do not dare open my mouth and say to them that alternatives exist and that it was not necessary to give them an end ileo at 18, 35 or 52....I shut up because they are happy and it is not my job to make them miserable about their condition.
We are the exceptions to the rule, we know better, that there is a quality of life to be expected and that better health and physical freedom from pain, suffering and agony is possible...but you have to know how to say it, who to say it to and how to play the game...or you get shut out.
I understand the frustration and anger, I've been there (2000-2005) when my French surgeon did a less than acceptable job leaving me with a sunk and twisted valve that caused constant hemmorages and put me in permanent danger...by the end of month 1 he wasn't even answering my calls and by the 6 month line he was flat out lying to me (we will do, we will try...with never an apt or call back), in the end he told me that one day I will be brought in by ambulance and then he will be able to do whatever he likes to me without my consent (meaning an end ileo)...
I had to go private (at great expense) to get anyone to even look at me...write letters, emails and make phonecalls to every colo-rectal surgeon in Paris in the hopes that someone would take pity on me...it took til 2008.
I found a real 'human being' with a heart and soul who took over and I never looked back...those people are hard to find but that is exactly what you need right now...not someone 5000miles away who cannot follow up and costs a fortune that you do not have...go to your GP and get that letter written, get on every waiting list that you can and make call after call until someone finally says yes....and get yourself a complimentary healthy insurance plan (I have 2!)....
Hugs from way over here
Sharon

Sorry to hear what's happening to you Solomin,
As much as I hate what my Jpouch did to me(and still is doing to me), I hate that you can't get yours reconstructed even more. What ever happened to people having hearts... You'd think it should be your call when to give up or not give up.
Keep trying is all I can offer,
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