It’s time to Trust Your Gut!

People living with Inflammatory Bowel Disease (IBD) are being encouraged to look beyond symptom relief and focus on long-term goals to prevent serious complications.

As World IBD Day approaches on 19 May, patient advocates and healthcare professionals are changing the narrative around IBD treatment. The goal for treatment shifts from focusing on simply treating symptoms to aiming for a more focused, long-term treatment plan.

Inflammatory bowel disease (IBD) is a long-term autoimmune condition that causes ongoing inflammation in the digestive system. It includes Crohn’s disease and ulcerative colitis, and while it can affect anyone, it often starts in young adults and is becoming more common in South Africa.

“People often think that IBD only affects adults, but about 1 in 10 people diagnosed with IBD in South Africa are 18 years or younger” says Dr Lesego Ndhlovu is a Specialist Paediatrician and a Paediatric Gastroenterologist.

IBD Africa, a non-profit organisation with the aim of improving inflammatory bowel disease (IBD) care in sub Saharan Africa, states that IBD is increasing worldwide and has seen an exponential increase in IBD diagnosis over the last 50 years. Healthcare advocates warn that gaps in care mean many patients are living with poorly controlled disease, increasing their risk of hospitalisation, surgery, and long-term damage.

Symptoms and Management of IBD

Symptoms can come and go, with periods of flare-ups and remission. The most common signs include ongoing diarrhoea that may last for weeks or months, sometimes with blood or mucus, stomach cramps, fatigue, weight loss, and a low-grade fever. Some people may also experience urgent trips to the bathroom or disrupted sleep due to symptoms. In more severe cases, IBD can cause complications in the gut and affect other parts of the body, like joints, eyes, and skin. If it is not well controlled, it can lead to blockages, infections, or even surgery to remove part or all of the bowel.

While IBD cannot be cured, it can be managed with the right treatment and ongoing care. The goal is not only to relieve symptoms but to control inflammation and protect the gut over the long term. This often involves medication, regular check-ups, and working closely with a healthcare provider (gastroenterologist) to adjust treatment when needed.

Why Treatment Goals Must Change

Many people living with IBD know what a flare-up feels like and also the relief of a good day, or even a stretch of weeks when symptoms seem to settle. But feeling better doesn’t always mean the disease is under control. In many cases, inflammation can still be active beneath the surface.

Historically, IBD treatment has focused on symptom relief. But today, experts are calling for a more proactive approach. “It is time we elevate the care of IBD, mucosal healing is the goal we should be aiming for,” explains Dr. Thania Kahn, gastroenterologist. “It’s not enough for patients to feel better. If the inflammation inside the gut is still active, the risk of complications remains.”

Mucosal healing refers to the repair of the gut lining, and is associated with improved long-term outcomes, including sustained remission, fewer hospitalisations, and a reduced need for surgery. Many patients, particularly in the public sector, are still dependent on steroids or face delays in accessing specialist care and advanced treatment options.

“IBD is lifelong and chronic, but it is manageable,” says Dr. Kahn. “With the right care, patients can live full, healthy lives. The challenge we face locally is ensuring that patients are not just diagnosed – but optimally managed.”

A Story That Brings It Home: “Two Days Away from Losing My Colon”

Nico Dhevnanan’s experience highlights what’s at stake when IBD is not adequately managed. “I was two days away from losing my colon,” he recalls. “The doctors told me it had been too many days and the inflammation wasn’t coming down. It was quite a traumatic experience, because it became my reality. We had tried everything, and I just wasn’t responding. The pain and fatigue were overwhelming. I couldn’t even lift my daughter.”

Through close collaboration with his gastroenterologist and a shift in treatment, Nico avoided surgery and achieved mucosal healing, helping him reclaim his quality of life. “Being with the right doctor at the right time made all the difference. It really came down to acting quickly and making the right decision,” he says.

His story is a reminder that better outcomes are possible. Living with IBD doesn’t mean accepting ongoing symptoms or that you will have to live with the complications of a long-term condition later in life. You can work with your doctor on a long-term plan that can change all of that.

The Importance of Talking About IBD

For many patients, one of the biggest barriers to care is stigma. Some people find it uncomfortable to talk about a sensitive topic, which leads to a delay in getting the help they need.

IBD Africa is tackling this head-on with a podcast episode featuring Nico, Dr. Kahn, and journalist Uveka Rangappa, aimed at normalising conversations around the realities of living with IBD – from bowel habits to mental health and relationships.

“We have to talk about these things,” says Dr. Kahn. “Because they affect every aspect of a patient’s life and without open conversations, we can’t improve outcomes.”

What ‘Trust Your Gut’ Really Means

South Africans living with IBD are encouraged to ask deeper questions, not just whether their symptoms are under control, but whether their long term health is.

Treatment should aim for healing of the gut lining, not just symptom relief, and patients are encouraged to act early if their condition is not well controlled by speaking to their doctor about available options. Consistency is also critical. As Nico explains, “You have to stay on your medication, even when you feel okay.” Accessing trusted information, such as the IBD Africa podcast and educational resources, can also help patients better understand their condition and treatment journey.

This World IBD Day, the message is clear, you can live a long and healthy life with IBD and reduce your risk of long-term complications. And the best part is that you don’t have to do it alone, together with your healthcare team, you can find the long-term treatment plan that works best for you. It’s time to Trust Your Gut.