Exploring the Unseen Costs of Inflammatory Bowel Disease

The broader effects of IBD are difficult to capture with clinical measures alone. For example, imaging may show that inflammation is under control, yet IBD symptoms may persist, creating the need for additional support.² 

Dr. Megan Riehl, a GI psychologist, sees firsthand how this disconnect between clinical data and lived experience creates a silent struggle that impacts relationships, career decisions, body image, and daily life. 

Addressing these complex needs requires access to integrated, multidisciplinary care for people living with IBD. Having gastroenterologists, gastrointestinal (GI) psychologists, dietitians, and care navigators working together ensures patients receive comprehensive, coordinated care. Yet, around the world, many patients lack access to this multidisciplinary approach, and for others, the sensitive nature of IBD symptoms such as incontinence remains among the hardest to discuss even with their healthcare providers. Fearing unpredictable flares and sudden accidents, many individuals isolate themselves, missing work or school, and stepping back from social life, which can often fuel anxiety and depression. 

Access to a team of specialists – such as GI-specialized psychologists, dietitians and nurses – helps patients build resilience and manage the unpredictable nature of their condition. 

Proactive intervention can help improve long-term outcomes.³ By targeting the underlying drivers of both inflammation and tissue scarring early in the disease course, clinicians may be able to prevent cumulative, irreversible structural damage to the GI tract, lower surgical rates, and give patients a better chance at sustained, long-term remission. 

Medical care alone is not enough. Patients also need accessible education, guidance, and support systems. Patient advocacy organizations play a crucial role in equipping individuals with the tools and peer networks needed to navigate daily life and participate in shared decision making regarding their treatment plan. 

“The most important thing to understand about IBD is it’s not a one-size-fits-all disease and every patient’s experience varies,” says Laura Wingate, Chief Education, Support and Advocacy Officer at the Crohn’s & Colitis Foundation. 

Beyond clinical endpoints, Wingate notes that patients consistently share common goals: attending school, building careers, traveling, and living without constant anxiety. 

On a global scale, patient advocacy organizations also play a vital role in addressing broader economic and policy barriers to access care. According to Koichiro Kimura, Vice Chairman of the Japanese NPO IBD Network, national advocacy efforts are essential to ensure policymakers understand the total economic impact of IBD, including the importance of helping patients maintain their health so they can remain active in the workforce. 

Transforming the future of IBD care is a complex challenge that no single organization can achieve alone. By advancing research, expanding multidisciplinary care within clinics, and partnering directly with patients, advocacy groups, healthcare providers, and policymakers, we can work together to address the unseen burdens of these chronic conditions.