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Stoma patient experience
If you are diagnosed with a chronic disease, your long-standing life plans may be disrupted, but it should not stop you from achieving your dreams, let alone pursuing even more beautiful ones. 24-years-old Pierre-Louis is living proof of this, he has managed to combine his passion for sailing with a new mission in life: to raise public awareness of Crohn’s disease so people understand it better and, at the same time, encourage other sufferers to come out of their shells and live their lives to the full.
“This condition made it difficult to develop and go to school like everybody else, especially since this disease comes in flare-ups. You can be fine for several months, then suddenly being unable to venture too far from the toilet for three weeks. I took medication to manage the disease, but still had crises that made me tired and forced me to watch my diet carefully. When my friends for instance suggested that we go to a restaurant, I didn't dare tell them that I couldn't because I was sick.”
It took some time before Pierre-Louis finally accepted his illness.
“The first step in accepting the disease is to make friends with your body. And that is sometimes difficult. Even if people have the same disease, everyone lives with it differently; it also depends on how severe each particular case is. But the most important thing is: Don’t be afraid to talk about it, to consult patient associations, turn to friends ... And then you realize that people are sympathetic, they mean well, and negative reactions are rare.”
“I wanted to sail and make the sea my profession in the navy, but it was no longer possible due to my diagnosis. That's when I realized that I would have to fight my way through and learn to live with my disability.”
“If I hadn’t been sick, I might never have found the courage to fulfill my dreams. The project ‘Vogue avec un Crohn’ gradually took shape in my mind. During the first years of my illness, I didn't talk about it at all. You end up self-isolating and withdrawing into yourself. So from one day to the next, I decided to stop hiding, to stop being ashamed of my illness. I went from one extreme to another, from saying nothing about my disease to raising the voice for all patients with IBD through ‘Vogue avec un Crohn’.”
“The first thing that changed was how I perceived my disease. With the stoma, this invisible Crohn became visible. I felt that suddenly everybody could see that I was sick.”
“I think this was my greatest challenge ever; it wasn’t the longest or the most difficult tour, but I’m proud that I made it through, even with an ostomy.”
“All this allows me to face the challenges the ocean puts before me with confidence and prove that, despite my disease, that everything is possible with good preparation.”
In November 2022, Pierre-Louis successfully took part in the single-handed yacht race Route du Rhum and is therefore the first sailor with a chronic disease to cross the Atlantic alone!
1) The name ‘Vogue avec un Crohn’ is a French play on words: en vogue (fr) means in fashion; and voguer (fr) means to sail. So literally you ‘sail fashionably with Crohn’s’.