I was 19 years old, I had the impression of waking up in the body of another, after the intervention which should have cured me of ulcerative colitis, an inflammatory colon disease from which I had suffered for 6 years. . But during the operation, the surgeon severed the bad artery, the one that irrigated my small intestine.
This surgical error changed my life. After 9 days of coma and necrosis of my perfectly healthy intestine, I woke up with only 30 cm of small intestine (instead of 6 to 7 meters) and a permanent intestinal stoma.
15 h of infusion per day
I trained at the hospital to be as independent as possible in my care and no longer depend on a nurse. I now have to connect an IV to the catheter attached to my chest from 5 p.m. until 9 a.m. the next day. This infusion is vital for my body to be properly nourished and hydrated. Because even if I eat a lot – up to 9000 calories per day instead of 2500 – to force what I have left of my intestine to work so that it does not atrophy, my 30 cm of intestine does not assimilate only about 20% of vitamins, minerals, lipids and other essential carbohydrates and proteins.
The corollary? I have to empty my ostomy bag many times a day. Nonetheless, she saves my life. To destigmatize it, I dress it with pretty covers, designed by a seamstress of whom I am the muse (Kangaroo Shop, on Facebook).
I hid for 6 years
Before arriving there, I had severe blues, especially when I realized that my future would not be the one I had envisioned and that I could not study at the university to become a psychologist. And then, even if it’s terrible to say, I had a loath for myself. It was impossible for me to look at myself in the mirror, nor to touch my scars or my stoma pouch. I didn’t like myself anymore and I thought that you couldn’t love me like that. In my eyes, my life was ruined, my dreams of starting a family, of having a sweetheart, of being a mother were going to be forbidden to me.
For 6 years, I hid out of shame, embarrassment and fear of the gaze of others, because the rare times that I poured out on my stoma, I heard hurtful thoughts, like “it is disgusting “. I cried a lot. It took me many years to tame my new body and accept myself as I am, with my scars. They have helped make me the woman I have become, with a positive mindset, looking to the future. Getting over all these hardships has been a daily struggle, which I am proud to have won.
What could have killed me made me stronger
My rebirth came in June 2018, when I created my Facebook page, where I communicate about my life.
From then on, I freed myself. Initially, I wanted to help other people with ostomies, or living with short bowel syndrome, and help lift the taboos on the ostomy.
Ultimately, it brings me as much as what I bring to the people who follow me. Today, I have acquired an inner peace that allows me to move forward. I chose to be in life and to decide my existence, savoring all the little pleasures that I have long forbidden myself, such as bathing, because I was afraid that water would enter the catheter. In fact, I just need to cover it with a completely occlusive dressing. As for the pocket, I swim most often with a one-piece swimsuit, so that it stays firmly against me then, when I get out of the water, I remove it, I shower before change it in a clean and dry place. And I avoid eating and drinking so as not to be bothered.
I also remain hopeful in medical research, particularly on stem cells. In the meantime, I have a lover, and our existence no longer revolves around my health, but around our history and what we are going to found. We moved in together and I intend to build a very nice life for us.
Read also :
- Ulcerative colitis: 2 women testify
- IBD: genetics and the microbiota, both responsible
- IBD: 10 million patients worldwide