Hello, my name is Caroline Dufour-Jean. I am thirty-five years old, married and I have two wonderful sons.  I am a dynamic, determined and very optimistic woman by nature. I enjoy life and I live every minute to its fullest.  Let me introduce you to a summary of my personal journey, more precisely the one that led me to believe in my project and to make it happen. 

I have been ileostomized since November 2006 following severe ulcerative colitis. This disease has been part of my life ever since I was 16 years old, although at that time I was not conscious of being ill. It was acutely recurrent during periods of intense stress and returning to normal right after. It was like this until I was thirty years.

2002, the diagnosis falls: CANCER. Doctors discover it following blood tests, but at that time they still do not know which one it is. I am subjected to all sorts of examinations, I am scared, I am feeling cold and alone lying on my stretcher in that long hospital corridor. I cry and I am crushed.  My husband does not know how to reassure me and even my corridor neighbors don’t dare at all to complain about their own misfortunes.

Finally, physicians get back to me. They are two now, they do not speak to me directly, they do not tell me anything. I try to read in their eyes but I can’t. They take me for another round of tests. Hey ho... I exist, I'm here, please talk to me! I have the image of Maxime, my four year old son in my head. He needs his mother, I can not have cancer! God if you exist, I beg you to help me, please show yourself!

It has been 48 hours since I arrived and finally, the doctor comes with the results. The verdict: ovarian cancer. It is quite advanced, more precisely a grade 3 and it weighs 2.2 kilos. I have to undergo an emergency surgery and to have my right ovary and its fallopian tube removed. During the surgical operation, surgeons discover multiple metastases on the intestinal walls. They remove certain parts of my body and send them to laboratory for analysis. It’s malignant!

It is not over yet, they must inject me a powerful chemotherapy cocktail with three 3-week cycles for a total of 9 consecutive weeks. I'm feeling dead, barely breathing. I am in the 7th week of treatment, there is still no change and I do not want to go back. I looked at my son and I told him that I love him but that Mom is tired and that she has no more energy to fight. He kneels down in front of me and looks at me in the eye and says: “Mom, do it for me”. Therefore I am leaving for the hospital to win the GOLD medal. I will not give up,  I must live for myself AND for my family.

March 24th 2003: it’s my last treatment. I'm cured. Because of my family’s courage and determination and of course my own, I finally got over this unwelcomed intruder who had established its quarters out of my body.

Summer 2003: Everything has returned to normal or almost...  I take my life back in hand head high. I am happy despite what doctors say about my chances of having other children. And then, I became pregnant, I expect my second son, a new life is growing inside of me. This is such a big surprise, even to the oncology department. They can not believe it. This is a first!  I am a fighter, I have not given up. I wanted another child and now the miracle happened.

My bowel has not said its last word. It no longer wants to work, it fights against me, it is sick, ulcerative colitis reappears. The chemotherapy has destroyed my immune system. I must again and again take medication, but I am allergic to all types of pharmaceuticals treatments.  I can only take cortisone and Salofalk (medication for the treatment of inflamed colon lining). As soon as I reduce cortisone, the colitis flares up again. My pregnancy has not helped because I could not take my medication. So, after three years of ineffective treatment, I have to face the obvious: physicians must remove other parts of my body: my large intestine, my rectum and my anus. What in the world will I become?

I am now surfing on the Internet trying to learn more on the surgical procedure and to get familiar about what to expect. I am in total darkness; I have no one to help me. I am ashamed of losing those parts of my body. I want to keep them, they are mine! I am talking with my husband on the little we know about the operation. I told him about my fears, my fears of losing parts of my body and about having a pooch hung to my body at all times.

We do not know whom to turn to, doctors can not put me in contact with other ostomates, it is a medical confidentiality.

I finally meet an enterostomal therapy nurse, she tells me about the surgery and of what she believed to be living with a stoma would be like. But she is not ostomized!

I have no other choice but to undergo the intervention and resume my dignity. I am 34 years old and I have been wearing diapers for over three years now. This is not a life! Now I am beginning this new adventure confused and stuttered with many questions.  Will my husband still find me beautiful and attractive with this new body? I dare not to ask. He understands my dismay, takes me in his arms and proposes to me. "Caroline, I love you, do you want to marry me? I have been part of your life for the past ten years and this little problem will not change the fact that according to me you are the most beautiful. We will undertake this journey together". Wow! Life holds so many nice surprises.

My moral is at its best.  After the surgery, I will finally be healthy again and live a good life with my perfect family. The “day” has arrived. After more than eight hours on the operating table, it is finally completed and another piece of me is in the garbage.

As I wake up, my brain clears up from the surgery and I see it...  this intruder hung onto my abdomen. It is round, all red and wet. It moves when I breathe. In fact, it is alive, like me. I look at it, I find it quite pretty. I named it Charlotte.

Everywhere I go, Charlotte is with me. Sometimes she makes me sweat but I respect her and accept her because it is through her that can I live and that I am now in a perfect sate of health again.

After a few months, I tell myself that I need to work on a project that will help people like me going through what I just went through without being left in complete darkness. This project will provide them with information, care and appropriate support in their daily lives whenever they need it. I want to accompany them before and/or after their stoma.

Still today in Quebec, we must face alone this new environment because there is no stoma center that can guide and inform us. There are only associations that unfortunately can not meet all our needs.

Finally, I sincerely believe that a new wind will blow on the taboos lived by ostomates. It’s not a shame to have a friend on the abdomen, which is why I want to show them that even with a stoma, it is possible to lead a good and active life!

A proud to be ostomate!

Caroline Dufour-Jean