Known for being extremely painful and causing social disability, Crohn's disease currently affects a large number of people in France. What is daily life like with this disease, and how do patients cope with sudden, violent flare-ups? Here is some information to help you better understand the challenges of this unique condition.

Crohn's disease: a little-known affliction

What is it?

Crohn's disease is a chronic condition that causes inflammation of all or part of the digestive system, with the intestine usually being the most affected organ. This disease is often associated with ulcerative colitis, both of which are referred to as ‘chronic inflammatory bowel diseases’ or IBD.

According to the French social security system, Crohn's disease affects approximately one in every thousand people, with eight new cases reported for every 100,000 inhabitants. Crohn's disease usually develops in early adulthood, although there are some cases of late diagnosis in older people, as well as in children and young adolescents. According to VIDAL, a group dedicated to providing information on health products, 60,000 people in France are affected by this condition.

How does Crohn's disease manifest itself?

The chronic inflammation of the intestine caused by Crohn's disease can lead to severe abdominal pain and diarrhoea, sometimes with blood, during what are known as ‘flare-ups’ of the condition. Inflammation of the digestive tract causes ulcers and thickening of the intestines during flare-ups, as well as serious perforations in some of the most severe cases.

The symptoms of this disease vary depending on the location of the digestive tract that is affected: nausea, heartburn, lower abdominal pain, acid reflux, etc. Symptoms appear during flare-ups of the disease, which can last up to 8 days: these are impossible to predict and can take patients and their families by surprise. Remissions, on the other hand, can last from a few days to several years.

What are the known causes of IBD?

Direct heredity and genetic predisposition are most often cited as explanations for the emergence of new cases, although heredity alone can only partially explain the onset of the disease.

Research is still struggling to understand the precise origin of the disease: we now know that an imbalance in the gut microbiota, smoking and environmental factors could contribute to its onset. Several other avenues are currently being explored, according to the French national health insurance system: psychological stress, processed foods, the impact of pollution, etc.

Treatments are also being studied to cure Crohn's disease, which is still considered incurable today. In some cases, appropriate medical support can reduce the frequency of flare-ups, and in the most extreme situations, removal of part of the digestive tract may be recommended.

This is not really a solution for patients whose quality of life deteriorates over the years as they live with the disease.

Overexposure to ultra-processed foods could also be one of the causes of this disease. This would explain why the United States and north-western Europe are the most affected parts of the world!

In general, it is recommended that people who want to protect themselves from developing IBD avoid highly processed foods as much as possible, as these are directly linked to:

- Poor nutritional quality with increased consumption of sugar, salt, calories and saturated fats

- A negative impact on the bioavailability of food and chewing time

- The presence of additives and pollutants from the composition of ultra-processed products and their packaging.

Living with Crohn's disease: daily discomfort

The social impact of this condition

Living with Crohn's disease is a daily struggle: patients live in fear of a new flare-up and gradually cut themselves off from their activities, social circles and professional lives. Isolating and considered shameful due to its gastric symptoms, Crohn's disease remains a real taboo today.

People with the condition can develop a panic fear of leaving their homes, for fear of having an attack in public, in an unfamiliar place, or in the company of their loved ones. While the physical impact is difficult to bear, the social impact is extremely destructive. This also applies to parents of children affected by this condition.

How can you live better with Crohn's disease?

The unpromoted benefits of a non-industrial diet

Raw (i.e. non-industrial) food is strongly encouraged by the medical profession during flare-ups of the disease: by favouring foods rich in minerals and vitamins, patients can try to combat the side effects of the disease (sudden weight loss, devitalisation, general weakness and weakening of the immune system, etc.). Similarly, according to the Haute Autorité de Santé (French National Authority for Health) and ESPEN (European Society for Clinical Nutrition and Metabolism), it is preferable to favour a diet low in fibre and residue.

Living with Crohn's disease: rigorous daily organisation

Every time they leave home, people with Crohn's disease may experience intense anxiety: depending on the situation, journeys may need to be meticulously planned to ensure that a rest area or public toilet is available if needed. This is done without any certainty that these places will actually be accessible when needed..

BubblesMapper is committed to the well-being of everyone in public spaces

BubblesMapper is an interactive, collaborative map that allows pedestrians and users of public spaces to quickly find toilets near their location. This is done in direct collaboration with local businesses! This makes it possible for people with IBD or parents of children with Crohn's disease to travel more peacefully and move around in public spaces with greater confidence, knowing that they will be able to find toilets, changing rooms, places to get changed, or even take a shower if necessary. This helps them regain confidence and dare to chart a new course for their daily lives with the disease.