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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.
Pierre-Louis’ normal life as a teenager came to an abrupt end when he was 16 years old. He had developed constant diarrhea, abdominal pain, digestive problems and sometimes blood in his stool. After several visits to the doctor and numerous gastrointestinal examinations, the diagnosis was clear: Crohn’s disease.
Pierre-Louis, who has been passionate about sailing since he was 7 years old, always saw himself going into the French Navy ... but Crohn’s threw a spanner in the works and his childhood dream was suddenly put on hold.
He didn’t give up. With courage and tenacity, he managed to turn his life around and started a somewhat crazy project which combines offshore sailing, raising awareness among the general public, and encouraging other people with Crohn’s to overcome their fears and challenge themselves: ‘Vogue avec un Crohn’(1).
Pierre-Louis founded ‘Vogue avec un Crohn’ in January 2017. This large-scale project uses the medium of major sailing events to inform people about Crohn’s disease and ulcerative colitis, both of which are inflammatory bowel diseases (IBD). His message is clear: “Even with a chronic disease, a lot of things are possible! It is necessary to show some fighting spirit to cope with life's challenges and live well.” By participating in the international championship Solitaire Le Figaro in August/September 2018, a ten-day sailing tour, he fulfilled his first childhood dream.
Only one month after this challenge, Pierre-Louis had to undergo emergency surgery. His colon, which had been battered by Crohn’s disease for years, just perforated. The only solution was to create a temporary ileostomy to give his colon time to heal.
He stayed in hospital for two weeks, and then he decided that the ostomy would not stop him from doing what he had planned. Several weeks of rehabilitation and rebuilding his body followed. He learned to live with his stoma bag and quickly became independent.
Six months later, when his surgeon announced that Pierre-Louis’ stoma could be permanently reversed, he preferred to postpone this surgery because the appointment in Mai 2019 collided with the Normandy Channel Race. So instead he set sail together with his friend and co-skipper – and his stoma! For one week, the two sailors lived on board in spartan conditions: surrounded by the cold, humidity and waves and without showering.
So Pierre-Louis enjoys life to the max and is full of ideas for new projects. ”After crossing the Atlantic with a friend in the double-handed sailing race, Transat Jacques Vabre, in October 2019, my next goal is to become the first sailor with a chronic disease to cross the Atlantic alone! I plan to participate in the transatlantic single-handed yacht race Route du Rhum in 2022.” Such an endeavor requires immense discipline, regular medical monitoring and special equipment on the boat.
In fact, every race needs a great deal of physical and mental preparation in advance. Pierre-Louis follows a special diet and does everything necessary to keep himself healthy. Additionally, he swears by yoga, which helps him deal with the stress factors during the races, because stress can provoke a new Crohn’s disease crisis. Regular checkups and consultations with his doctor and gastroenterologist ensure adequate treatment. This is especially important for the days and weeks during his ocean races when he is 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’.
