Inflammatory bowel disease: Looking beyond symptoms for better long-term care

LIFESTYLE NEWS – Inflammatory bowel disease (IBD) is a lifelong condition that affects millions of people worldwide, yet it remains widely misunderstood. Greater awareness, earlier diagnosis and advances in treatment are helping to improve long-term outcomes and quality of life for those living with the condition.

IBD primarily includes Crohn’s disease and ulcerative colitis. 

Both involve chronic inflammation of the gastrointestinal tract, but they affect the digestive system differently and can cause unpredictable flare-ups, long-term complications and significant disruption to daily life.

IBD is also often confused with irritable bowel syndrome (IBS). Although the conditions can share some symptoms, IBS does not cause the chronic intestinal inflammation associated with IBD or the same type of structural damage to the bowel.

“IBD is an autoimmune condition, meaning the immune system mistakenly attacks the body’s own tissues, in this case the gut,” says Vanessa Snow, Head of Medical Affairs at Johnson & Johnson Innovative Medicine South Africa.

“It is not caused by stress or diet alone. Genetics, the microbiome, immune dysfunction and environmental factors all play a role in how the disease develops and progresses.”

Crohn’s disease can affect any part of the gastrointestinal tract, from the mouth to the anus, and inflammation can extend deep into the bowel wall. Ulcerative colitis, by contrast, affects the colon and rectum, causing inflammation of the intestinal lining.

Common symptoms include persistent diarrhoea, sometimes accompanied by blood, abdominal pain, fatigue, weight loss and an urgent need to use the bathroom.

The effects of IBD are not always limited to the digestive system. Some people also experience joint pain, eye inflammation, skin conditions and mental health challenges.

“These are not just stomach problems,” Snow says. “For some people, IBD can be debilitating and life-altering, and in severe cases may require hospitalisation or surgery. The impact often extends beyond physical symptoms, affecting education, employment, relationships and overall quality of life.”

Because symptoms can overlap with those of other conditions, people may delay seeking medical advice or struggle to obtain an accurate diagnosis. 

Persistent or concerning symptoms should be assessed by a healthcare professional.

The approach to IBD treatment has evolved beyond simply controlling symptoms. Long-term care increasingly focuses on controlling inflammation, reducing the risk of complications and limiting disease progression.

This means looking at both how a person feels and what is happening inside the bowel.

One important measure is endoscopic healing, which refers to visible improvement or healing of the bowel lining when examined using an endoscope.

“Endoscopic healing allows clinicians to look beyond how a patient feels and assess how effectively inflammation is being controlled at its source,” Snow explains.

“Evidence shows that patients who achieve endoscopic healing are less likely to experience flare-ups and long-term complications, making it an important consideration in ongoing care.”

Endoscopy can help doctors diagnose IBD, monitor disease activity and guide treatment decisions. Advances in medical therapies and more personalised approaches to care also allow clinicians to tailor treatment to individual disease characteristics and patient needs.

Achieving lasting control may require ongoing monitoring and adjustments to treatment. Patients should work with their healthcare team to determine the most appropriate management plan for their condition.

Medication is only one part of effective IBD care. Nutrition, physical activity, stress management, mental health support and patient education can also contribute to overall wellbeing.

Living with a chronic condition that can flare up unpredictably may affect a person's confidence, social life, work and relationships. Access to reliable information and emotional support is therefore an important part of care.

“People living with IBD are at higher risk of anxiety and depression,” Snow says. “Providing education, emotional support and access to care from the point of diagnosis is critical.”

A healthcare team can help patients understand their condition, recognise changes in symptoms and navigate treatment options. 

Support from family, friends and appropriate patient networks can also help people feel less isolated.

Despite advances in diagnosis and treatment, misconceptions about digestive diseases remain common. Symptoms may be difficult to discuss, mistaken for other conditions or dismissed as minor digestive complaints.

Delays in diagnosis and treatment can increase the risk of complications and affect long-term quality of life. Raising awareness can help encourage people to seek medical advice sooner and improve understanding of the realities of living with IBD.

“Knowledge empowers patients,” Snow says. “By raising awareness, encouraging earlier diagnosis and connecting people to reliable information and support networks, we can help people living with IBD feel less alone and better supported.

“As our understanding of the disease continues to evolve, so too does the opportunity to improve long-term outcomes and help people live fuller, healthier lives. With the right care, IBD does not have to define a person’s future.”

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