It's often dismissed as a “bathroom disease”, but South Africa is seeing increasing incidence of inflammatory bowel disease (IBD), a hidden chronic illness prevalent mainly in urban areas.
According to IBD Africa there are about 18,000 registered patients in the country, with numbers steadily increasing, especially in urban areas.
IBD primarily includes Crohn’s Disease and Ulcerative Colitis — chronic inflammatory conditions affecting the gastrointestinal tract.
The disease — a group of chronic inflammatory conditions affecting millions worldwide that remain largely misunderstood and often misdiagnosed — is being highlighted in the week of World IBD day (observed on May 19).
MYTH: IBD is caused by diet and can be cured by changing what you eat.
FACT: IBD is an immune-mediated disease involving genetic susceptibility and environmental triggers. In adults, no diet has been proven to cure IBD, though dietary modifications may help manage symptoms.
MYTH: IBD is the same as irritable bowel syndrome.
FACT: These are entirely different conditions. IBD involves chronic inflammation and subsequent damage of the gastrointestinal tract and can lead to serious complications that may require surgery. IBS is a functional disorder without inflammation or tissue damage.
MYTH: IBD is just a bathroom disease.
FACT: IBD is a systemic inflammatory condition that can affect joints, skin, eyes, and other organ systems beyond the digestive tract.
— Several persistent misconceptions about IBD:
“The rising prevalence of IBD represents both improved diagnostic capabilities and a genuine increase in disease occurrence worldwide,” said Dr Thania Kahn, a Cape Town gastroenterologist.
“What was once considered rare in many parts of the world is now recognised as a significant global health challenge.”
Kahn said living with IBD is far more than a “bathroom disease”.
Patients endure a complex often invisible struggle that affects every aspect of their lives.
Chronic diarrhoea requiring sudden and urgent bathroom needs, debilitating pain and extreme fatigue can interrupt even the most carefully planned days.
Global epidemiology data reveals a staggering reality: more than 10-million people worldwide live with IBD, with prevalence rates rising dramatically.
Recent studies from the Global IBD Epidemiology Consortium show a 7.2% increase in diagnosed cases between 2020 and 2024, particularly in industrialised nations and emerging economies.
At the South African Gastroenterology Society Congress last year it was revealed the IBD Africa Registry has seen an exponential increase in IBD incidence in South Africa over the past 50 years.
“Because the vast majority of patients do not die from autoimmune diseases, this means compounding prevalence results in an ever-increasing number of patients requiring chronic care,” said Kahn.
Dr Zozibini Mhlaba, a medical doctor and an ulcerative colitis patient, shared some of her realities.
“I wish people knew how anxious I get about going to public spaces when I have a flare up because I always need to know where the nearest toilet is and I have to explain to everyone why I need the toilet every 10 minutes.
“I wish people knew the anxiety that comes with changing medication because I am constantly thinking about when my next flare will be.”
Specialist IBD sister Karin Davidson, head of The Cape Town Infusion Centre, said the psychological impact takes its toll on IBD on sufferers.
“What family, friends and colleagues often don't see are the nights spent in pain, the medications with side effects and the mental load — the fatigue is also utterly debilitating, yet so many patients suffer in silence and so many say it is the loneliest disease in the world.”
• Persistent diarrhoea
• Abdominal pain and cramping
• Blood in stool
• Unintended weight loss
• Extreme fatigue
• Reduced appetite
• Fever during flares
• Joint pain
• Skin issues
• Eye inflammation
— IBD symptoms vary but commonly include:
Serious complications can include intestinal strictures (narrowings), fistulas, abscesses, malnutrition and an increased risk of colorectal cancer. Mental health is also significantly affected, with higher rates of anxiety and depression among patients.
“Early and accurate diagnosis and treatment initiation is crucial for controlling inflammation, preventing disease progression and complications,” said Kahn.
While IBD remains a serious chronic condition without a definitive cure, treatment options continue to improve.
“Living with IBD today is fundamentally different than it was 20 years ago.
“With modern treatments, most of our patients lead full, productive lives — they are able to do things that might have seemed impossible for previous generations of IBD patients,” said Kahn.
Davidson said when more people understand that IBD isn’t a diet or lifestyle choice — or something people can just ‘get over’ — it creates space for genuine support rather than judgment or dismissal.
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