Can someone explain what this means?

Solomin,

Do you have chronic pouchitis that is medically refractory to medical treatment or functional pouch issues? If so, this would probably be why the recommendation was made for removal of your pouch and creation of a permanent ileostomy. Follow up on this and ask all the questions you need in order to determine the reasons for this recommendation.

Also, I am being recommended for pouch advancement surgery due to chronic cuffitis. I am 49 and my age was never mentioned as an issue with the surgery. I am not sure what all your complications are and how long you have had them and that may be why your quality of life is something that you and your surgeon should be considering with regard to pouch removal.

Jeane,

I have been diagnosed with an overstretched pouch (6"x2")that will eventually become floppy and useless. As it is now, the symptoms I have are:

- constant Nausea, mild to severe
- mild abdominal pain
- lower back pain (intestinal related)
- difficulty evacuating (i.e. constipation)

Over the last 2 years my symptoms have been getting worse.

Tack on a useless surgeon who:

- does not have the balls to tell me he couldn't do the surgery (he scheduled me twice, got cold feet and cancelled)
- claims there are no qualified surgeons in the province of Quebec who can perform such surgery
- did not help in any way in trying to locate a surgeon (even though he knows them all across Canada and is very familiar with the Cleveland Clinic)
- has kept me waiting 2+ years for a necessary letter which must be written by him so I can apply to the Quebec government and get approval to go outside of province (i.e. pay for surgery)
- does not get along with the director of the Colon-rectal unit at the hospital (his boss) so they do not even communicate (It should be noted that the director is personal friends with two doctors in Toronto qualified to do this type of surgery)
- never made any attempt to communicate with surgeons that I had to source on my own to see if they can do the surgery

I have wasted two years of my life searching for a surgeon who can do jpouch reconstruction surgery because of the incompetent surgeon and utter lack of action / cooperation. I hold this doctor and the hospital completely responsible.

I did find a doctor in Toronto qualified for surgery. I do not have a date as there is a 2 year waiting list.

My quality of life write now is at an all time low. I can hardly function at work, and risk losing my job. I can no longer wait two years, I need something to be done as soon as possible.

As a bonus, the stress from all this inaction and constantly feeling sick has take its toll on me. My GP says that I am showing signs of depression (who would tolerate such pathetic treatment?)

The surgeon I found in Toronto cannot drop everything and do the surgery. He has other priorities (cancer patients), which is why the waiting list is so long. He understands I can go on this way and he recommend that I go to a permanent bag.

I do not have pouchitis; my pouch is free of ulcers; it just does not work properly.

So to summarize, I am incapable of performing my work functions, sick with horrible nausea and pain, don't sleep nights because pain at times is unbearable (it wakes me up), have no surgery date, and am getting zero cooperation from the hospital and surgeon.

Did I also mention that the medical staff for this doctors are cows, show no compassion, no sign of humanity, and downright rude? When did doctors and their offices forget that they are dealing with human beings? When did they lose their humanity?

Two years and no closer to surgery. All this is unacceptable. The treatment I have received is pathetic.

I refuse to accept a permanent bag when there are alternatives and pouch reconstruction has been done successfully.

Nobody wants to live with a bag - I certainly don't. I want a chance to have as normal digestive system as possible. It is all I am asking for. I cannot afford to go to the United States.

I see very little alternative but to take legal action against the hospital and this doctor. I also want as many people as possible to know my story and how disgusting and pathetic the actions of the Montreal surgeon and his hospital have been.

Thank you.

Solomin

Solomin,

I am so sorry for your pain and situation. If only you could afford to go to the US for your surgery. There are doctors that will allow you to set up a payment plan (I did that with my surgeon) as he did not accept my insurance. PM me if you would like. I can offer you some Us surgeon names as can others on this board. I just don't think you should have to be in this situation if you can somehow financially work out an arrangement with a very qualified pouch reconstructive surgeon. Two years is way too long to go on feeling the way you are and yes, you should take action against the surgeon if he did your surgery and was not capable.

I was certain I wanted a qualified surgeon (and believe me I had one even though I h ave had some complications since surgery not related to my surgeon). That is why I chose the one I did despite the fact he did not take insurance. It took me some time to pay my bill as he did negotiate a fee with me prior to the surgery.

Best of luck to you and I hope you get relief soon.

that is crazy!!! can't believe canada is next door, so similar yet so different. feels like being a prisoner in your own healthcare and very limited options. i would do as you do - everything in my power to get to the best place possible so i don't have to suffer many more years because of someone else's dishonesty/incompetence. Would be great if you could afford to see someone in the U.S., or at least have a consultation (like over mail/phone with Cleveland Clinic??) to AT LEAST see you are in the right direction, and getting the right care. Can you do that? Get an opinion from someone in the States based on your tests and records? There is the possible option to build a second j-pouch, or even a k-pouch, but you have to find a doctor who is more than capable and very experienced to reduce the risk. Only a few places are reputable at doing "reconstructions" and "re-do's" (Cleveland being one of them). Doing a second j-pouch does NOT have the same success rate as a first j-pouch (I think second j-pouch is like 60% success rate, and first j-pouch is like 85%), so you want to get it done right. Hope you get excellent care soon! keep pushing!

Thanks all for the words of encouragement.

Not all doctors are like this in Quebec. I believe the problem to be my surgeon and his actions (or lack there of) are not indicative of the Quebec health care system.

I will take action against him and the hospital, and won't stop until people know what a pathetic doctor he is.

Mark,

I'd like to urge you to see the other surgeon for his opinion, not to get an ileostomy, but to get the letter of need, so that you can be referred to Toronto for Dr. Cohen or one of his associates. That is the only way to really know what your options are. Another option is to get a temporary ileostomy to improve your quality of life while you wait for an opening with the other surgeons that can help you.

I am so sorry that you have wasted so much time with a surgeon that could not help you. While I understand you desire to take action against your current surgeon, don't let it side-track you from the real task of your personal health. From what others have told me, it is more difficult to persue a medical malpractice case in Canada than th U.S.. Certainly get legal advice to see how best to proceed in that regard, just be prepared for years of litigation.

Jan

I am way out of my league in terms of knowing about this area (just had my colectomy). But is it possible for you to get a diverting loop ileo until the qualified surgeon can get to you?

As luck would have it, I took some time to really think about my situation, and I decided to contact the medical doctors (GI and Surgeon) for whom I was a patient 30 years ago.

I sent an email to the former head of the GI department at the Montreal Ste Justine's Hospital (French children's hospital) when I was a patient there 1979-1985. At the time he took excellent care of me. He is by far the best doctor I ever had in my life in all aspects. Of course he remembered me (who could forget me? )

He told me that the best doctor in Quebec for jpouch reconstruction surgery in Quebec is the doctor I am to see on Monday for the first time. He said she is the only doctor that he would trust with such a surgery.

Hopefully something positive will come out of this meeting.


Solomin

solomin.. good luck on monday. and keep in mind the possibility of a temporary diverting ileostomy. I mentioned that to you many months back when you initially posted about your difficulties in getting a surgeon. Also as a reminder, the "technical" expertise required to just disconnect the jpouch and give you a diverting ileostomy is not near as great as what is needed for a pouch redo or pouch excision. It may be way for you to get an improved quality of life, and buy time to get the proper surgeon on your case.
good luck.