As we mark World IBD Day, South Africans living with Inflammatory Bowel Disease are encouraged to ask deeper questions—because healing isn’t just about feeling better, it’s about repairing the gut from the inside out.
Imagine planning your day around toilet access. Cancelling social plans out of fear that your gut might flare up unexpectedly. For approximately thousands of South Africans living with Inflammatory Bowel Disease (IBD), this isn’t just a passing inconvenience—it’s an everyday reality.
IBD is a chronic illness that includes Crohn’s disease and ulcerative colitis, both of which cause long-term inflammation and damage to the digestive tract. Symptoms can include abdominal pain, fatigue, diarrhoea, rectal bleeding, weight loss, and urgency. In severe cases, people report needing the bathroom more than 20 times a day. It’s a disease that’s often invisible to others, yet relentlessly disruptive to the person living with it.
Importantly, IBD is not the same as IBS (Irritable Bowel Syndrome). IBS is a functional disorder that affects how the gut moves and feels, but it does not cause inflammation, bleeding, or damage to the gut lining. While both can be painful and distressing, IBD is far more serious and can lead to complications like malnutrition, hospitalisation, and surgery if left untreated.
If you or someone you love lives with IBD, you probably already know what a “flare-up” feels like. You may also know the relief of a good day, or even a stretch of weeks where symptoms settle down. But did you know that feeling better doesn’t always mean your gut has healed? That’s where a term called mucosal healing comes in—and it could change how you think about managing IBD.
What is mucosal healing?
Mucosal healing means that the inside lining of your gut—the part that gets inflamed and damaged in IBD—isn’t just feeling better, it’s actually repairing. It shows that the inflammation is under control and that long-term damage is being avoided. Doctors can check this through tests like colonoscopy, stool samples, blood work, or imaging.
Why does this matter? Because even when symptoms improve, hidden inflammation may still be active—and that can quietly cause further harm. “Mucosal healing really is pivotal,” explained Dr Thania Kahn. “Patients who achieve mucosal healing early on have better disease control, fewer flares, and a reduced risk of complications. In ulcerative colitis, it can even change the course of the disease and reduce the chance of losing your colon.”
As Nico Dhevnanan, who lives with IBD, put it:
“It’s not something you can just Google and understand. I had to be willing to ask questions, to do the research, and to be consistent with my treatment. You have to understand how important it is to stay on your medication—even when you feel okay.”
The global shift in IBD management
Doctors around the world are starting to change how they treat IBD. Instead of just focusing on controlling symptoms, the new goal is to heal the gut lining. Guidelines now recommend aiming for what’s called mucosal healing, along with helping patients feel better and avoid long-term problems.
Monitoring tools such as colonoscopies, stool and blood tests, and in some countries, intestinal ultrasounds, can help assess this deeper healing. While access in South Africa is still inconsistent, these conversations are starting to happen.
“It’s important that patients feel safe asking questions,” says Dr Kahn. “We talk about everything—from stool consistency to intimacy—because these are the things that impact a patient’s quality of life. There are no silly questions.”
As patients start to track how IBD affects their everyday lives—on work, mood, relationships, and energy levels—they can have more meaningful conversations with their healthcare teams. “We talk about poop like it’s a meal,” Nico said with a laugh, “but honestly, that openness helps. I needed to understand my own body, and I could only do that once I started asking and stopped being ashamed.”
Why this matters in South Africa
South Africa is seeing a marked increase in IBD diagnoses—yet awareness remains low. According to IBD Africa, a non-profit organisation dedicated to improving awareness, education, and support for people living with Inflammatory Bowel Disease across the continent, there are currently around 18,000 registered IBD patients in the country, with numbers steadily rising, especially in urban areas. Despite this, many individuals are still misdiagnosed, experience delays in receiving care, or remain unaware that healing beneath the surface—such as mucosal healing—is even a possibility.
An article in the South African Journal of Gastroenterology and Hepatology recently asked the pressing question: “Are we doing enough?” For many, the answer is no. Access to effective therapies remains limited, particularly in the public sector, and even patients on private medical aid often face restrictions. As a result, too many are left managing flare-ups, dependent on steroids, and living with uncertainty.
Dr David Epstein, founder of IBD Africa and a practising gastroenterologist, emphasises: “Inflammatory Bowel Diseases are lifelong, incurable conditions—but with multidisciplinary, holistic care and access to appropriate medication, patients can achieve excellent remission, a normal quality of life, and reach their full potential.”
Nico’s story is a powerful example of what can happen when the right treatment arrives just in time. “I was two days away from losing my colon,” he shared. “The pain, the fear—it’s hard to describe. But thanks to the right treatment, we were able to avoid the surgery. I still have my colon, and that’s something I’m deeply grateful for.”
Listen, learn, and start the conversation
You don’t have to navigate IBD alone. Whether you’re newly diagnosed or have been living with it for years, the most important thing you can do is start an open, honest conversation—with your doctor, your loved ones, and your community.
To help spark those conversations, IBD Africa has released a brand-new podcast on Spotify and Apple featuring a powerful discussion between a Dr Thania Kahn, gastroenterologist, Nico Dhevnanan, a patient living with Ulcerative colitis, and journalist Uveka Rangappa. Together, they unpack what it really means to manage IBD—from understanding the goal of mucosal healing to navigating everyday challenges. You can find the episode now on all IBD Africa platforms.
So before your next appointment, take a moment to listen. You might just walk in with the right questions—and walk out with a clearer path to healing.
“Don’t give up now,” Nico says. “Make sure you’re in front of the right medical team. Trust the process. Accept that this is your reality—then take charge of it.” Because when we talk about what’s happening inside, we make space to heal on the outside too.