Inflammatory Bowel Diseases – you are not alone
Crohn’s disease and ulcerative colitis, commonly known as inflammatory bowel diseases (IBD), affect patients’ quality of life. Their incidence is increasing worldwide; however, little is known about the origins and the development of IBD.
Diagnosed in the prime of life, these diseases can affect all areas of a patient's life such as school, work, social and family relations. They are chronic, they last a lifetime, and they are painful. Nevertheless, adequate treatment with medication may provide symptomatic relief, reduce inflammation, and manage acute flare-ups(1).
Whatever stage you are in right now, whether you have just been diagnosed or have already been living with IBD for a long time: This page is meant to encourage, give advice and show that you are not alone. You will learn about two young men, Marcel and Pierre-Louis, both of whom have been suffering from Crohn’s disease for many years. Yet they have achieved great things in their lives. And although their stories are very different, the message they have for you is the same:
You are not alone! If you have been diagnosed with IBD, you can still live life to the full and follow great dreams.
Symptoms of Crohn's Disease from the patient's perspective
Marcel from Switzerland, now 34, has been suffering from Crohn’s disease since he was seven years old.
"Crohn’s disease is chronic inflammation of the intestines. The disease often progresses in episodes: You have to deal with diarrhea, severe abdominal cramps and sometimes blood in your stools. The diarrhea is one of the reasons why you lose energy, because you can’t keep the energy from the food with you. You become tired and listless as a result. At times, you might have to go to the bathroom 30 to 40 times a day. Often I would sit on the toilet all night in extreme pain."
Pierre-Louis, a French sailor, was diagnosed with Crohn’s disease at the age of 16. He remembers this time, when his life took a sudden turn for the worse:
"I started having symptoms in the gastrointestinal tract: diarrhea, abdominal pain, digestive problems… And I told myself 'this will pass'. But no, it didn’t pass, it got worse and worse as the weeks went by, until I discovered blood in my stool." – "Everything became difficult: Difficult to go out, difficult to see my friends, difficult to go on vacation. In these conditions, it was not easy to be a normal teenager, to focus on your studies at school, and do stuff with friends. I took medication to manage the inflammation. I could be fine for several months and then suddenly have several difficult weeks again – and I was unable to tell my friends that I was sick."
Life-saving stoma surgery
It is quite common for patients with Crohn’s disease to receive a stoma at some point in their lives, but it is not mandatory. For people with a refractory inflammatory bowel disease, like Marcel, a permanent stoma may be a solution. Other patients, like Pierre-Louis, may only get a temporary stoma, for example because of a colonic perforation, to allow their colon to heal. Such a temporary stoma is then reversed in a surgery involving the bowel reconnection and the closing of the stoma site.
Pierre-Louis was 21 when one of the crises cause by Crohn’s disease resulted in peritonitis, a perforation of his colon. To save his life, he had to undergo emergency surgery which resulted in the creation of a temporary colostomy to give his colon time to heal.
"I was hospitalized for two weeks. When I left the hospital, I could barely walk for more than 10 minutes. But then I decided that, just like Crohn’s disease itself in all the previous years, even my colostomy wouldn't stop me from doing what I want! I started rehabilitation and rebuilding my body, and after two months, I resumed my training to prepare for the next international sailing challenge. I even asked my surgeon to postpone the reversal surgery as it was unfortunately planned on a day which fell during my one-week race."
At the age of 20, Marcel received a permanent ileostomy, knowing that this surgery was vital for his survival.
"At first, it was very hard to get used to the bag on my belly. I hated it! But soon I noticed that I felt much better with the stoma and my motivation and zest for life returned stronger than ever. I would be lying if I said I wouldn’t like not having a stoma. But I wouldn’t have it removed, because I am so much better off with the stoma than I was before. The positives far outweigh the negatives – I am really happy with my stoma and wouldn’t change it back again."
Breaking taboos, talking about disease
Today Marcel is 34 years old. The stoma saved his life and doesn’t stop him from doing whatever he wants to – not even sport. And he has set himself a goal: He no longer wants to remain silent; in actual fact, he has a lot to say. That is why he has been active on social media for two years and is the leader of a support group in which he advises and supports stoma wearers.
“People with chronic diseases are often accused of just pretending to be sick, when in fact they pretend to be fine much more often. I have gone through this very experience. I have been bullied and suffered a lot ... I want to tell my story so that other people do not have to go through the same thing.“
Marcel deliberately breaks the taboo subject, because his experience has shown that the more openly he talks about it, the more understanding people become. He wants to encourage others:
„Life goes on, even with a stoma. It is no reason to give up your hobbies or favorite activities!“
Pierre-Louis, has also set himself the goal of actively arousing public awareness in Crohn’s disease and its consequences.
"During my first few years with Crohn’s, I didn't talk about it at all. At some point, I realized that not talking about my disease became harder than the illness itself: You end up isolating yourself and withdrawing into yourself. So, I decided to no longer be ashamed of my it. And literally overnight, I transformed from somebody who never talks about his disease to somebody who tells everyone. This was the start of an ambitious project.”
In this project, which the passionate sailor Pierre-Louis launched in 2017, he combined the sport with the topic of Crohn’s disease and the solidarity project “Vogue avec un Crohn”4) was born. It involves a sailing ship, with the same name, which he skippers. Pierre-Louis’ goal is to create awareness about inflammatory bowel diseases through major sailing events. At the same time he wants to encourage chronic patients to leave their homes, spend time with friends and talk openly about their illness.
„Crohn’s disease is very dissocializing and the risk of inadvertently self-isolating is rather high if you don’t overcome your shame and talk about your condition. Of course, the disease brings certain limitations, but with courage and persistence, we can still do great things.“
Two brave young men
1) Sairenji T, Collins KL, Evans DV. An Update on Inflammatory Bowel Disease. Prim Care. 2017 Dec;44(4):673-692. doi: 10.1016/j.pop.2017.07.010. Epub 2017 Oct 5. PMID: 29132528.
4) 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”.