All over the world, buildings are lit in purple on Tuesday to draw attention to chronic intestinal diseases. This also applies to the Markt in Weert.
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John Cardinaal’s brasserie turns purple, because he knows from his own experience how important it is that there is more understanding and more awareness about these diseases. “Unknown makes unloved,” he says.
IBD
People with IBD (Inflammatory Bowel Diseases) have severe abdominal pain and diarrhea, which means they often and suddenly have to go to the toilet. This can have a major impact on their daily lives. The most common IBD diseases are Crohn’s and ulcerative colitis. Other IBD conditions, such as Behçet’s disease, are less common.
Thunder in a clear sky
Cardinal was diagnosed with ulcerative colitis 25 years ago. That came to him as ‘thunder in clear skies’. “It was a difficult period in my private life. My father passed away and with that I lost my business support and support. After that I fell ill. I had to vomit constantly, I was in pain everywhere and I was afraid it was my heart.”
He is now able to cope well with his illness, but if he gets stressed, it is all hands on deck again. “When I suddenly had to close my business a few weeks ago, my intestines immediately started to bother me again.” Cardinal is good at talking about his illness: “I don’t mind talking about it, but it’s not on my Facebook page.”
Taboo
This is different for other patients. The unfamiliarity of the disease and the taboo to talk about it often leads to misunderstanding. More attention should therefore be paid to these diseases, says Matthias Jürgens, doctor specialized in intestinal diseases. “Patients sometimes have to go to the toilet up to 30 times a day. They have to constantly consider whether there is a toilet nearby. It has a huge impact, especially on the work floor.”
Pain
That is why the theme of the day is work this year. In total, about 90,000 people in the Netherlands suffer from one of the two intestinal disorders. Crohn is the most common of these. The diseases are accompanied by inflammation throughout the gastrointestinal tract and can be very painful. “Sometimes it feels like you are pushing your gut out, it hurts yes,” says Cardinal. He has his own catering business, so if his bowels play up, he can quickly go to the toilet, but this is not the case for everyone. “I can imagine that if you work by appointment or travel a lot, it can be very annoying.”
Modifications
Research by the patient organization Crohn and Colitis Ulcerosa Vereniging Nederland (CCUVN) shows that fatigue, stress, pain and concentration problems are the greatest obstacles at work. Some people have had adjustments in the workplace, but most people have not. However, many people want this. According to the interest group, there is mainly a need for flexible working hours, fewer hours of work, working closer to home or working from home.
To talk
Cardinal thinks that especially talking about it helps. “No one can see from the outside that you are a bowel patient. I understand that it can be difficult. When you talk about it, there is more understanding.”
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