In recent decades, the prevalence of inflammatory bowel disease (IBD) has increased across Europe.
The two most common forms of IBD are Crohn’s disease and ulcerative colitis, which are chronic inflammatory conditions that often affect people during their early adulthood. World IBD Day takes place on 19 May every year. To mark the occasion this year, a panel of leading experts answer frequently asked questions on IBD.
Philippe van Hootegem
Philippe is a member of the UEG Public Affairs Committee as a representative from the European Crohn’s and Colitis Organisation (ECCO). He is a Consultant Gastroenterologist at the Sint-Lucas General Hospital, Bruges, Belgium and Associate Professor at the Faculty of Medicine of Leuven University, Belgium.
Gigi is a member of the UEG Public Affairs Committee and a Paediatric Gastroenterologist at the University Hospital Brussels, Kids-z Castle and Professor at the Free University of Brussels, Belgium. Gigi is also the Secretary General of the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN).
Maciej is a member of the UEG Public Affairs Committee and works in the Department of Biochemistry, Medical University of Lodz, Poland. Maciej sits in the UEG Public Affair Committee as a representative from the UEG Young Talent Group.
Luisa is the CEO of the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA). EFCCA’s main objective is to improve the well-being of people with IBD of all ages.
What is the cause of IBD and is there a cure for the disease?
Maciej Salaga: The pathogenesis of IBD is not fully understood. Importantly, environmental and infectious factors, together with genetic predisposition lead to elevated levels of pro-inflammatory cytokines in the course of IBD.
Philippe van Hootegem: The exact causes of Crohn’s disease and ulcerative colitis are not yet known. At present, it is assumed that the disease is caused in people who have a hereditary predisposition, by a disproportionate reaction of the bowel immune system against microbes that penetrate the intestinal wall. As the exact cause of the disease is not fully understood, currently there is no available definitive cure for the disease.
Are there any risk factors that I should be aware of that could cause or exacerbate IBD?
Luisa Avedano: Studies indicate that the inflammation in IBD involves a complex interaction of factors; the genes the person has inherited, the immune system, and something in the environment. Crohn’s disease tends to run in families. Studies have shown that 5% to 20% of affected individuals have a first-degree relative (parent, child or sibling) with one of the diseases. The risk is greater with Crohn’s disease than ulcerative colitis and he risk is also substantially higher when both parents have IBD. The environment in which you live also appears to play a role. IBD is more common in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates.
Maciej Salaga: The impact of diet and smoking on IBD is unquestionable. High intake of monosaccharides and saturated fats relate to increased risk of IBD.
How does IBD develop over time? Will I have to undergo surgery or need a stoma?
Gigi Veereman: Each patient has his own particular course so predictions are often difficult. A stoma is a very unlikely occurrence in childhood IBD.
Luisa Avedano: Recent advances, such as the development of biological drugs, have produced increasingly effective medical therapies for Crohn’s Disease. There have also been changes in the way surgery for Crohn’s is managed. For example, extensive resections (removal of diseased sections of the intestine) are now less common. Surgery remains an important treatment option, often in combination with medical therapies. It is estimated that up to eight out of 10 people with Crohn’s will need surgery at some point in their lives.
I have tried a number of IBD medicines, but nothing has worked for me. What can I expect from any new anti-IBD medicines?
Maciej Salaga: There is now a lot of hope for those who suffered from ineffective pharmacological treatments. The recent introduction of new generation of biological drugs, such as anti-integrin antibodies, have already made a significant change in the anti-IBD drug scene. These molecules are more selective than their predecessors and cause less adverse events. I believe that in the next 5 to 10 years, we will see even more new medicines with improved effectiveness and safety profiling.
Philippe van Hootegem: Traditionally the main treatment goal for IBD remains to achieve and maintain remission and ultimately to ensure optimal quality of life. The “classical” treatment with corticosteroids is efficient but has important side effects when used long-term. Many new drugs have been developed in the last twenty years (including infliximab, adalimumab, vedolizumab, ustekinumab) that can help to obtain a steroid free remission and also to achieve disappearance of the inflammatory injuries in the gut. These drugs are efficacious and have an acceptable safety profile. Nevertheless, they do not work equally well in all patients or lose their efficacy after a certain amount of time. Fortunately, new promising medications are being developed at a high rate, including risankizumab, JAK inhibitors and SP1-receptor inhibitors. They will probably be able to cover some unmet needs and help some of the patients.
Am I still able to take part in sport or physical exercise if I have IBD?
Gigi Veereman: Absolutely. It is recommended that patients avoid exhaustion when exercising, but regular physical activity is definitely advised.
Lisa Avedano: Many people living with IBD are able to lead an active lifestyle and participate in challenging sports competitions. Many of IBD patients regularly participate in activities such as marathons, triathlons, long trekking trips and sailing.
Is there a possibility that IBD could develop into cancer?
Gigi Veereman: Yes, chronic inflammation is a risk factor for cancer. In ulcerative colitis, screening begins after 10 years into the disease. For children who develop the disease at an early age, screening may also be needed in adolescence.
Philippe van Hootegem: Patients with IBD may have an increased risk of colorectal cancer. This depends mainly on the severity, localisation and duration of the inflammation. Crohn’s disease or ulcerative colitis patients with long-standing and pronounced inflammation of the large intestine have a significantly higher risk of cancer than patients with Crohn’s disease and only damage to the small intestine. There also seems to be a higher risk in patients developing strictures or with so-called inflammatory polyps. The presence of biliary tract inflammation that can occur in combination with IBD is an important risk factor for colon cancer. In order to prevent colorectal cancer as much as possible, it is highly recommended to regularly perform an intestinal examination (such as colonoscopy surveillance) in patients with an increased risk, with intervals of every 1, 3 or 5 years, depending on the risk assessment.
Will I have to take care when travelling abroad if I have IBD? Will there be any problems in getting necessary vaccinations?
Lisa Avedano: Having IBD will not keep you from travelling abroad. All that is needed is a little extra planning, such as consulting with your doctor about necessary vaccinations, making sure you have suitable health insurance, taking enough medication and bringing relevant medical documents with you.
Philippe van Hootegem: With a good preparation IBD patients can visit virtually every travel destination. A few practical tips include discussing your travel plans with your doctor in good time, ensuring you get enough rest and sleep during your stay and avoid foods and drinks that you do not trust. For tropical destinations, it is mandatory to check the required vaccinations and to ask whether you can get them. You should not get vaccines with live attenuated viruses, such as yellow fever vaccine, if you take medication that suppresses the immune system. Ask your doctor if you should take antibiotics and emergency medication for flares with you on the trip. It may also be useful to take a recent medical report, translated into English or in the language of your destination.
As a result of my IBD I feel constantly tired – is there anything I that I can do to stop this?
Lisa Avedano: Fatigue in IBD is very common – over three-quarters of people experience fatigue during an IBD flare-up. However, there are a series of actions you can take to reduce or better manage your disease. Speak to your doctor or IBD nurse about this and not just assume that it´s part of the disease. They will be able to provide you with the proper care you need.
Philippe van Hootegem: Many patients with IBD complain of fatigue. This can due to a variety of factors such as the presence of active disease, anemia due to deficiencies in iron or vitamin B12, side effects of medication, an unhealthy lifestyle, anxiety, stress or depressive tendencies not uncommon in chronic diseases. Sometimes none of these possible causes is present and the patient remains tired. There is no specific medication against this. Healthy eating, sufficient exercise and enough sleep can all help. Talk about it with your doctor, family and friends. This may not be able to take away the fatigue, but perhaps can make it more bearable.
Can I become pregnant with IBD and, if so, will I face any complications during pregnancy as a result of my IBD? Or is there a chance that I could pass my disease onto my children?
Philippe van Hootegem: IBD does not in itself cause reduced fertility in men or women. However, active disease, poor nutritional status, some medications and previous surgery may have a negative role in fertility. Active IBD during pregnancy increases the risk of miscarriage, preterm birth or low birth weight. It is therefore important to have as inactive a disease as possible before becoming pregnant. Discuss the pregnancy wishes with your doctor in good time. In principle, pregnant women can continue to take most IBD drugs, with the absolute exception of methotrexate. Delivery can usually happen naturally. Women with IBD can breastfeed their baby but meanwhile, some medication is best avoided.
Luisa Avedano: Parents with IBD are slightly more likely to have a child who develops IBD. How likely seems to vary with the condition and is also higher in some population groups. Estimates vary but research suggests that in general, if one parent has ulcerative colitis, the risk of their child developing IBD is about 2%. For Crohn’s disease the risk is 5%. If both parents have IBD, the risk can rise to above 30%. However, we still cannot predict exactly how IBD is passed on. Even with genetic predisposition, other additional factors are probably needed to trigger IBD.
Is there a specific diet that I could follow that would ease the symptoms of IBD?
Maciej Salaga: Certain foods have been shown to be either beneficial or detrimental for IBD patients, indicating the need for the development of individualized diets. For instance, high vegetable intake has been associated with decreased risk of ulcerative colitis, whereas a greater intake of fibre and fruit is associated with decreased risk of Crohn’s disease. Results of a recent survey organized by Crohn’s and Colitis Foundation of America showed that yogurt and rice were more often reported to improve symptoms whereas fruits, vegetables, high fibre foods, red meat, fried food and alcohol were more frequently reported to worsen the symptoms.
Gigi Veereman: Some diets are believed to relive IBD inflammation. For example, the specific carbohydrate and following a gluten free diet – studies are ongoing to study their effect. An exclusive liquid milk based diet is proven effective to obtain remission in children with Crohn’s disease, although it is unfortunately virtually impossible to maintain such a diet permanently. Patients with IBD may suffer from IBS symptoms such as lactose intolerance or other food intolerances. Therefore, a specifically adapted diet may be helpful and the guidance of a dietician or nutritionist is always recommended.