I am reposting here, an open letter that I had posted on Poucherlifestyle...

40 years ago this summer Dr Green, my generalist, decided that he was tired of watching surgeons slice and dice my body into sushi on a regular basis, usually with no positive outcome.

He decided to send me to see his friend and fellow doctor, Dr Zane Cohen, a general surgeon.

I showed up to his basement office, at the Toronto General Hospital, with my medical file under my arm and fear in my heart.

Dr Green was sending me to the scaffold to be beheaded. I was to have an ileostomy done.

It was a surgery that I had been putting off for 15 years, since they had closed my colostomy at age 3.

Dr Cohen was a little man with big hair.

And bigger dreams.

He read my file and then spread out a dozen pamphlets for different kinds of ostomies. Some had plugs the size of bathtub plugs with magnetic rings to be placed under the skin to hold it in place…I had images of a sudden burst of gas or a sneeze and the plug flying across the room in a spray of ….

The bags were ugly, the stomas uglier and I was 18 years old.

There was no world in which I could imagine myself wearing one of these appliances and being happy.

So Dr Cohen pulled out another pamphlet from his desk drawer and placed it on the table.

It was printed on yellowish paper, had a sketch of a woman diving into the water and some man playing some very athletic sport.

I took a look and liked what I read.

There was no bag, no plug, no appliance whatsoever hanging off of the outside of my body.

Just me and a band-aid covering a bellybutton sized stoma.

“I want this one,” I said.

“You can’t have it,” he answered.

“Then why did you show me this brochure?”

And he was silent.

He sent me home with all of them, to study and made an appointment for the next week to decide which one I would have done and to set the surgical date.

I came back with only one pamphlet in my hand and one choice.

He said I couldn’t have it. It was still experimental. I was too young. There were not enough studies on the long term effects, it was too dangerous, couldn’t we try something else first and then in 2 years if I wasn’t happy we could try this one…

I repeated. I want this one. 

Or none.

And then he asked the question.

“Do you want to live the rest of your life with the decision made by an 18-year-old?”

“Yes, I answered.”

Apparently, he believed me.

It took a long time to get through all of the tests, both physical and psychological. The board of surgeons who would decide my fate and my future.

The psychiatrist who would decide if I was mentally apt to handle the stress.

But I made it through it all, alone.

I told my parents 1 week before the surgery.

They were not happy. They tried to talk me out of it. My mom was furious at the idea that I would have a tangible, outside visible proof of the damage going on inside my body. She never forgave me.

The night before surgery Dr Cohen came in and admitted that he had doubts, wasn’t sleeping, was too worried. Wouldn’t I please change my mind?

No…I can’t.

I need to start living and I cannot until this is over.

I need a life.

We have been through it all together. The bad and the worse, the complications and the disasters. The hopes and the healing.

Through it all, you trusted me and my belief in you.

Through it all, we trusted each other.

Thank you, Zane. You gave me a life.








Original Post

sharon--thanks for the tribute to how you and your doctor worked together.  very sweet!  and thanks for your never ending determination.  it is inspiring.  janet

I always say that this is not a sprint but a marathon...we have to look at the end-game, the long term results and not the immediate difficulties...yes, we suffer, have surgeries, treatments and hell...but in the long run we achieve a better quality of life with our pouches than without them...they are worth fighting for, as all of us here know...we just need more surgeons willing to do them.


Hi again.  I was treated at Toronto General then operated at Mount Sinai when my doctor, Robert Stone, became Chief of Surgery there in 1977.  I lived with a conventional ileostomy for 18 months before getting the K-pouch at CHUS in Sherbrooke (I lived in Montreal at this time) in February 1979.

I was also warned about the unknown long-term affects, possibility of recurrence of the UC in the pouch etc.  Wonderful surgeon Dr. Devroede, a great stomatherapist, Soeur Pierrette Cote, at the hospital and an even better one, Bertha Okun, in Montreal.  Best decision I ever made - simplifies life so much!!. 

I live in Germany now and finally found a great doctor in Köln who does Kock pouches.  Just knowing he is available if I have an emergency is a great relief. 

Good luck to all K-pouchers!

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