Misunderstood. Taboo. Crohn’s disease has no cure. In the most severe cases, doctors recommend removing part of the intestine. Non-profit organisations are working to raise awareness and support people living with the disease.
No disease is sexy, but Crohn’s disease is particularly unsexy, says Adéla Fanta, secretary of the organisation Crohn Colitis Switzerland. “It involves talking about stool, consistency, blood, flatulence and stomach pains. Unfortunately, these are taboo subjects that people are ashamed to talk about.” The organisation was founded in 1986 and is made up of members, who are also affected by Crohn’s disease or ulcerative colitis, the other major disease caused by an inflammation of the intestine.
The often hidden symptoms of Crohn’s disease are characterised by irregular bowel function, pain and a sense of urgency to have a bowel movement. The condition affects the entire digestive tract, from mouth to anus, but more commonly the connection point between the small and large intestine. The disease can cause up to 20 episodes of diarrhoea per day. “Patients often also suffer from non-digestive symptoms, such as joint pain, skin problems, eye inflammation and and bile ducts,” says Thomas Greuter, clinic head in gastroenterology at Lausanne University Hospital (CHUV).
People who have the disease often live with embarrassment, driving many of them to isolate themselves. Yet it affects one in 500 people in Switzerland, mainly women (1.4 women for 1 man), and the onset is generally between age 20 and 30 or after the age of 60. The organisation estimates that 80% of individuals suffering from Crohn’s disease feel ashamed. “We have to go to the toilet frequently, and the pain is constant. And treatments, although providing some relief, can cause weight gain, skin problems and even hair loss, which can seriously reduce self-confidence,” says Adéla Fanta.
Talking to others about one is going through is essential to coping with the disease. “It’s one of the first things we say: you’re not alone.” The association provides answers to everyday questions about work life, pregnancy, sexual relations. She feels that patients often do not have enough time during medical appointments to ask real, personal questions. “Today, some people contact the organisation because they have just been diagnosed, while others ask about some surprising aspects. For example, can you get a tattoo? Yes. Can you go to a solarium? No.”
The exact causes of this chronic inflammation of the mucous membranes remain unknown. However, risk factors have been identified, such as smoking, gut microbiota health, antibiotic use, diet, especially processed foods. While the cause of the disease is unknown, it statistically affects more people in Western countries. One hypothesis to explain this imbalance is screening, which is more common in these countries. But, for now, the only scientifically proven risk factors are smoking and consumption of processed foods.
“The disease currently has no cure but is controlled with treatments and surgery,” says gastroenterologist Thomas Greuter. “These immunosuppressants reduce symptoms and lessen the severity of its course. Drugs work very well in one-third of patients, while for the other two-thirds the response is more partial or absent. In this case, surgery can be a solution.” There are various procedures, which consist of cutting away the diseased parts of the intestine and reconnecting the healthy parts. Another solution is an ileostomy, which involves redirecting the intestine outwards through the stomach. All stools are then evacuated into a stoma bag. This operation can be either a transitional treatment to let the digestive tract rest and optimise the effectiveness of drugs, or permanent if the damaged section is too large to be cut off. “Surgery is extremely common in the treatment process: 75% of people need to have an operation.”
For example, Juliette Mercier, who has had with Crohn’s disease since she was 15, underwent a full ileostomy. “I had to have an emergency operation in 2017. At the time, I was 1.69 m tall and weighed 37 kg. I was underweight, constantly tired, I had diarrhoea up to 20 times a day. I went to the hospital to be fed artificially, and my illness was so severe that I was forced to switch to a permanent stoma. In a panic, I looked for patient stories online but only found negative, terrifying information. After my operation, I wanted to share my experience through my medium of expression: comics.”
With humour and under the username “Stomie Busy”, Juliette Mercier has been sharing her personal story with more than 100,000 followers on Instagram. She talks about everyday life with the disease, trips to and from the hospital, as well as femininity and intimacy.
“Beauty has many faces and several bodies,” one of her recent drawings says. “Now my life is much better. I have no more symptoms! The bag takes some getting used to, but I’ve come to own it. It gives me more freedom.” In 2021, the illustrator published the comic book Ma Crohn de vie (Leduc Graphic), recounting her struggle with the disease.
“Everyone experiences their Crohn’s differently, which means you often have to try several treatments before finding the right one,” says Adéla Fanta, who is nevertheless pleased with the scientific progress. “When I was diagnosed 25 years ago, only two drugs were available. Today, there are ten or so drugs available. I’m hopeful that a cure will be found one day.” /
Remote working could work
“Crohn’s disease is not easily compatible with a job. Employers are afraid employees will be absent from work due to hospitalisation. They’re afraid of the disease.” Adela Fanta, secretary of the organisation Crohn Colitis Switzerland, feels that the business world is sometimes insensitive to inflammatory bowel disease. “Patients can also feel embarrassed, as company toilets don’t always offer much privacy.” She believes remote work is a good option for people with Crohn’s disease. Thomas Greuter, clinic head in gastroenterology at the CHUV, agrees. “Working from home takes the pressure off both socially and psychologically. When attacks occur and the person is dealing with pain and urgency to go to the toilet, it is more comfortable to be at home.” In addition, people with Crohn’s disease need to be careful to protect themselves during a pandemic, as treatment often leads to a drop in immunity.
There is nothing to stop a person with Crohn’s disease from becoming pregnant, but regular medical follow-up is important, especially to adapt treatment.
Sexual relations are compatible with Crohn’s disease but may be limited by abdominal pain and fistulas. Attacks can also decrease in libido.
Physical activity that stresses the joints should be avoided during flare-ups. Rest is prescribed during an attack. Certain sports may be contraindicated in the case of fistulas, such as cycling.
Anything that stimulates digestion should be avoided during attacks, such as raw fruit and vegetables, fizzy drinks, nuts, etc.
To avoid the stress of an emergency, it may be useful to locate public toilets before a trip. For example, the website wc-guide.ch has mapped out all pubic toilets in Switzerland.