Crohn’s disease and ulcerative colitis are the most common forms of inflammatory bowel disease (IBD). These diseases tend to occur at a relatively young age (15–30) and can significantly reduce the patient’s quality of life, with symptoms ranging from fatigue, abdominal pain, weight loss and chronic diarrhoea. These persistent symptoms can make daily life extremely difficult and may cause some people to be declared unfit for work prematurely. The course of the disease is difficult to predict per patient and the various treatment options available are not as effective for all patients. 

To gain a better understanding of the development of IBD, Maastricht UMC+ and the local hospitals in Sittard and Heerlen collaborated on a joint cohort study known as IBD South Limburg. The study currently includes 1,675 patients with ulcerative colitis and 1,162 patients with Crohn’s disease, which accounts for nearly all IBD patients diagnosed in South Limburg since 1991. The vast amount of data collected reveals that IBD is much more common than originally thought. Current estimates suggest that roughly two in every thousand people suffer from IBD, but these figures could be more than four times as high. Each year roughly seventy new patients per 100,000 residents are diagnosed with the disease – a figure that is also much higher than previously believed.

The researchers hope to develop more reliable diagnostic and treatment methods for IBD. ‘The care needs differ per patient,’ says project leader and gastroenterologist Marieke Pierik of Maastricht UMC+. ‘Making a final diagnosis takes time; it can take months to determine whether medication or surgery will have any effect. We want to find out whether specific patient groups can be defined, which in turn will help us determine how well a patient will respond to a specific treatment.’ The researchers are working on developing an individual approach per patient, which could lead to both health benefits and cost savings in the long term.

Tineke Markus, director of CCUVN (Netherlands association for Crohn’s disease and ulcerative colitis) and a patient herself, sees the potential of the IBD South Limburg cohort. ‘This extensive study shows how much we underestimate these diseases. Chronic bowel disease has a huge impact on your daily life, which is why it’s so important to promote high-quality research across the Netherlands. Hopefully this will improve the quality of life for patients in the future.’

IBD South Limburg will publish more findings later this year.