Inflammations under control, but still abdominal pain
Many people with chronic inflammatory bowel diseases such as Crohn's disease or ulcerative colitis continue to experience persistent abdominal pain. They feel that they are not getting enough help for their pain, even when their inflammations are well managed. Because there is still little known about this form of chronic pain, gastroenterologist Dr. Zlatan Mujagic of the Maastricht University Medical Center+ will conduct research to better understand it.
About 90,000 Dutch people have Crohn's disease or ulcerative colitis, which are chronic inflammatory bowel diseases (IBD). Even if the inflammations in IBD are well treated, up to 40% of patients experience chronic abdominal pain. This pain is difficult to treat, but has a major impact on their quality of life.
Better insight
Little is still known about the mechanism behind chronic abdominal pain in IBD, Mujagic explains: "With this research, we want to get a better insight into it and determine which factors contribute to the persistence of the pain, while inflammations are under control. We think that factors such as diet, previous medication use, stress, and social factors play a role. If we gain more insight into these factors, we can take them into account in treatment."
MyIBDcoach
Twenty Dutch hospitals are using myIBDcoach, which was developed and initiated together with the MUMC+. This is a digital method that helps patients monitor their own health status and learn to manage IBD. The method also offers better insight into the patient's health status for healthcare providers. About 7,000 patients use myIBDcoach and regularly answer questions about symptoms, medication, healthcare usage, and lifestyle. They will be asked to give permission to share this data from myIBDcoach for scientific research, allowing Mujagic to study the developments and mechanisms behind chronic abdominal pain.
Personalized approach
Based on the improved insight into pain, Mujagic hopes to make a personalized approach possible: "Because various factors play a role in chronic abdominal pain, we do not think that developing a single pain treatment will work. We hope to ultimately offer tailored solutions, such as a combination of medication and support from a dietician if diet plays a significant role, or social work if social factors are crucial."
Inflammatory Bowel Diseases (IBD)
IBD is the collective name for chronic bowel diseases, which includes Crohn's disease and ulcerative colitis. The Department of Gastroenterology and Hepatology at Maastricht UMC+ has a dedicated IBD team consisting of various healthcare professionals, including gastroenterologists, gastroenterology fellows, nurse practitioners, biological nurses, research nurses, surgeons with a focus on IBD, and researchers. The IBD team also collaborates with other disciplines such as dietetics, medical social work, clinical psychology, and psychiatry.
Holistic approach
The Department of Gastroenterology of the MUMC+ places great emphasis on the human aspect of patient care. Mujagic explains, "Many patients experience a so-called patient-doctor gap: the doctor treats a condition, but the patient still goes home dissatisfied. That is why we choose a holistic approach at MUMC+." The department conducts research on IBD, IBS, and other related conditions with a focus on the patient's well-being as a whole.
About the department of Gastrointestinal and Liver Diseases (MDL)
From 1 September, Gastrointestinal and Liver Diseases (MDL), previously part of Internal Medicine is officially a NUTRIM department. The MDL department, with Prof. Daniel Keszthelyi as chair, consists of more than 50 employees. The department tied with the research institute NUTRIM, is also affiliated with the research institute GROW and one of the MUMC+ 25 centres of expertise for rare disorders; the Expertise Centre for Gastrointestinal Diseases.
Interview with Daniel Keszthelyi on the centre of expertise for gastrointestinal disorders
MUMC+ has 25 centres of expertise for rare disorders; the Expertise Centre for Gastrointestinal Diseases is one of them, under the inspiring leadership of Daniel Keszthelyi.
"Why the Rare Disorders Expertise Centres are so important?” Because many of these patients are misdiagnosed and treated for years, running from doctor to doctor. They would like an explanation for their symptoms and the centres can provide that diagnosis sooner. And although not all complaints are treatable, patients are often relieved when they have an explanation after years of searching."
Maastricht UMC+ now has 25 centres of expertise recognised by the Ministry of Health, Welfare and Sport (VWS). The initiative for these centres came from the European community, which considered more attention to rare diseases necessary.
A multidisciplinary approach helps to understand symptoms
“The other day, doctors from America were on a working visit to the Centre of Expertise for Gastrointestinal Disorders.” They were impressed by our approach and found it unique," says gastroenterologist Daniel Keszthelyi. What is particularly unique is the integral way a multidisciplinary team approaches complaints. In addition to the gastrointestinal and liver doctor, this includes other disciplines such as psychology, psychiatry, dietetics, gynaecology, urology and surgery. Because in abdominal complaints, besides physical causes, psychological factors often play a role.
"We want to understand the symptoms," says Daniel. The multidisciplinary team first reviews the patient's medical record and then chooses a care pathway. Sometimes this is a consultation with several disciplines, other times with just the MDL doctor. Sometimes an opinion is enough, sometimes several additional investigations follow. One examination that can only be performed in Maastricht is measuring the motility of the small intestine. If there are several examinations spread over several days, patients can stay overnight in a hotel.
On average, patients from all over the country come to Maastricht with their unexplained abdominal complaints after about 10 years of doctoring. In 2019, the centre gained recognition as a centre of expertise. "But the foundations for this way of working were laid more than 30 years ago," says Daniel. Big advantage of being a Centre of Expertise is better visibility for patients. "Moreover, it strengthens European cooperation in this field, which helps science move forward."
Source: Hecht Magazine October 2023 Year 8 - number 2