Few Malaysians have heard of Inflammatory Bowel Disease (IBD), and it’s not surprising – until recent years, it was deemed a condition that mainly affected Western populations in developed countries.
However, as lifestyles and dietary habits across Asia increasingly resemble those of Western societies — with higher consumption of processed foods, reduced fibre intake, and more sedentary routines — alongside improved awareness, screening, and diagnostic capabilities, experts are seeing a marked rise in IBD across the region, including Malaysia, where cases have increased significantly over the past decade.1
A chronic condition, IBD is a term that encompasses Crohn’s disease, a condition that can affect the entire gastrointestinal tract, and ulcerative colitis, which affects the colon and rectum.2
However, despite symptoms like abdominal pain, chronic diarrhoea, rectal bleeding, and weight loss that can compromise every aspect of a patient’s life, many people continue to suffer without a diagnosis or treatment3, placing them at increased risk for serious complications like colorectal cancer.1
Dr Alex Hwong-Ruey Leow, consultant gastroenterologist and hepatologist, sheds more light on IBD, and why Malaysians should take note.
What Is IBD?
IBD is a chronic, relapsing autoimmune condition, a kind of dysregulation of the immune system. Our immune system acts like an army to protect us from pathogens; however, when this defence system goes awry, it can turn its weapons inward.
In IBD, the immune system mistakenly attacks the gut, triggering persistent inflammation that, over time, can cause lasting damage to the intestinal lining.4
How Common Is IBD In Malaysia?
We are now seeing more cases of IBD in Malaysia, among both paediatric and adult cases. Years ago, in Universiti Malaya Medical Centre (UMMC), where we have a specialised IBD clinic, we used to see only five patients per session many years ago; now it has increased to 30 patients per session.
If we continue on this trajectory, it is predicted that an estimated 1 per cent of our population will have IBD by 2050; that would be approximately 400,000 people.
The increase among paediatric patients, which is happening in many parts of the world, is especially worrying, for two reasons:
- IBD presently has no cure and requires lifelong management, with appropriate medication.
- Younger patients face more severe disease and there are limited treatment options for children.
What Are The Causes Or Risk Factors For IBD?
Different countries face different epidemiology. For example, cases have plateaued in developed nations and continues to climb in developing nations, owing to changes in lifestyle habits, especially dietary changes such as insufficient fibre and large amounts of processed food.1
Studies in Malaysia and other Asian countries have found these changes apply to both urban and rural populations as well.6
Apart from that, there may be a genetic component, imbalances in the gut microbiome, and emerging evidence of environmental factors such as pollution and microplastics as a trigger factor. However, there is no established cause nor preventive method at this point.7 8
What Are The Common Symptoms Of IBD?
Common bowel-related symptoms of IBD include abdominal cramps or pain, anaemia, bleeding from the rectum, diarrhoea, or urgency in passing motion and weight loss.9
The inflammation can affect other parts of the body as well and lead to eye problems, joint pain, inflammation of the liver, mouth ulcers, and skin problems.10
How Badly Can These Symptoms Affect A Patient, In Terms Of Pain, Overall Health, And Quality Of Life?
Symptoms of IBD can range from mild to severe, yet even in milder forms, the condition can profoundly affect a person’s quality of life, influencing education, career, relationships, and mental health.9 11
What makes IBD particularly challenging is its invisibility: most patients look outwardly healthy, despite battling chronic diarrhoea, abdominal pain, and fatigue from anaemia.
Because these symptoms are not immediately apparent, IBD is often not recognised as a disability, even though its impact can be deeply disabling.
This is why early detection and treatment is essential, to prevent the symptoms from getting worse, and to manage it well so that the condition becomes dormant and no longer impacts their quality of life.12
Why Are Many Patients Diagnosed Late? What Are The Barriers To Treatment?
There are several reasons why IBD is often diagnosed late. Many people initially dismiss their symptoms or attribute them to more common digestive issues.
Diagnosis can also be challenging, as IBD shares overlapping features with conditions such as irritable bowel syndrome and infections like intestinal tuberculosis.13
Since there is currently no single definitive test for IBD, doctors must rely on a combination of investigations and a process of exclusion to reach the correct diagnosis.
Delays are further compounded when patients consult multiple doctors, making it harder to identify recurring patterns. Global studies have reported that it may take eight months to a year3 before a patient is referred to a gastroenterologist for further evaluation.
Recently, intestinal ultrasound has emerged as a valuable tool to expedite diagnosis, allowing real-time visualisation of bowel wall thickening and inflammation.14
Expanding access to such imaging at the primary care level, such as public and private health care facilities could help shorten diagnostic delays and lead to earlier, more effective treatment for patients.
Can IBD Be Cured?
There is presently no cure, but treatment can help to relieve symptoms and induce remission of the disease.15
Treatment, if started early, can also help to prevent serious complications.12
What Happens If IBD Is Left Untreated?
If left untreated, IBD can lead to complications such as strictures (narrowing of the bowel), development of fistulae that can lead to abscess (build-up of pus), perforation of the bowel, and an increased risk of colorectal cancer.
Some of these complications may require surgery for treatment.3
What Kind Of Treatments Are Available For IBD?
There are a range of medications that can help to manage IBD. These are categorised as:16
- Anti-inflammatory, in the form of corticosteroids, which are very effective but associated with high incidence of side effects when used long-term.
- Immunomodulators that help to supress inflammation.
- Advanced therapies such as biologics, which help to manage the immune response.
Depending on the individual patient’s medical background and severity of IBD, a doctor may choose to ‘taper up’ by starting with anti-inflammatory therapy and use immunomodulators if needed. This is a more cost-effective strategy for mild to moderate disease.
However, when a patient has severe disease, it may be more important to gain control quickly, in which case a doctor may prescribe biologic therapy first before tapering down to use immunomodulators once the disease is more stable.
Regardless of the approach, the patient journey involves maintaining treatment for a long while. This can be challenging, as persistence is often influenced by factors such as side effects, loss of efficacy, and – most significantly – the financial burden of long-term therapy.
To improve treatment adherence and reduce the need for frequent hospital visits, certain biologic therapies are now available in self-administered formulations.
These options offer patients greater convenience, allowing them to receive treatment in the comfort of their homes while lowering the overall cost associated with clinic visits and day-care infusions.
At the end of the day, convenience, cost and treatment side effects all play a role in whether a patient can adhere to the treatment plan.
How Can Treatment Help?
Treatment can make a huge difference. In fact, it can change lives, especially for young patients. Among my paediatric patients was a 14-year-old who was anaemic, lethargic and experiencing abdominal pain to the point that it was affecting his studies and unable to take part in sports activities.
A simple, non-invasive stool calprotectin test revealed high levels of intestinal inflammation. After receiving biologic therapy, his condition improved dramatically.
Within a year, he regained his energy, excelled academically, returned to sports, and is now thriving in college with the same medication.
What Advice Do You Have For Patients With IBD?
Don’t suffer in silence. IBD can be treated and managed well — both to improve quality of life and to reduce the risk of complications. See a doctor for any prolonged gastrointestinal symptoms such as persistent diarrhoea, rectal bleeding, or abdominal pain; try to provide them with all the necessary background such as your symptoms, and how long you’ve had them.
It can also help to have a regular doctor who can monitor your progress, eliminate possibilities and arrive at a diagnosis as quickly as possible.
As my young patient found out, early diagnosis and treatment can make a world of difference, drastically improve quality of life and lead to a more promising future.
References
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