Nicholas N. Totah, MD1, Jason Wasserman, PhD2 1University of California Irvine Health, Orange, CA; 2Oakland University William Beaumont School of Medicine, Rochester, MI Introduction: Inflammatory bowel disease (IBD) poses significant challenges to an individual’s physical and emotional well-being, often reshaping their sense of self and life trajectory. Many patients suffering from IBD not only endure the physical symptoms of the illness, but often experience bouts of isolation, hopelessness, and anxiety surrounding their quality of life and what their futures hold. Patient narratives about these experiences offer an important window into their journeys with IBD. This research illuminates these less often explored burdens of the disease. A thorough understanding of the psycho-social aspects of IBD would improve patient care and empower clinicians to address not only the physiological aspects of the disease, but also the challenges of the lived patient experience with illness. Methods: This research used narrative analysis of patient narratives to identify key themes about the psychosocial aspects of living with IBD. Collected from the Crohn’s and Colitis Foundation website, thirty-nine narratives were analyzed for social, psychological, and affective notions using a line-by-line coding approach. Concepts expressed in bits of narrative were distilled into codes, which were then consolidated into categories and interconnected to form themes using mind-mapping software. Results: The analysis yielded three key themes. First, participants described how emotional strain, such as isolation or anxiety, often worsened physical IBD symptoms. Second, many expressed a sense of being misunderstood by their clinicians, particularly regarding the invisible nature and perceived stigma of their illness. Finally, a theme of “disability gain” emerged, with participants highlighting how community connection fostered validation, optimism, and resilience, thus reframing their illness experience in a more empowering light. Discussion: These findings reveal new opportunities for engagement with IBD patients. The first two themes reveal the importance of taking account of the social and emotional hardships and recognizing the strain of the disease. In response, physicians should make greater efforts to probe into the social and emotional experiences of IBD patients, ensuring that they feel seen in their experiences with the illness. Furthermore, by recognizing the theme of “disability gain,” physicians can support IBD patients by fostering reflective dialogue and connecting them with community resources that reinforce resilience and social support.
Disclosures: Nicholas Totah indicated no relevant financial relationships. Jason Wasserman indicated no relevant financial relationships.
Nicholas N. Totah, MD1, Jason Wasserman, PhD2. P3248 - Exploring Illness Beyond Disease: Unmasking the Lived Experience of Inflammatory Bowel Disease, ACG 2025 Annual Scientific Meeting Abstracts. Phoenix, AZ: American College of Gastroenterology.
