Living with IBD: Self-management in IBD is a complex, multidimensional process beyond medication adherence.

Background & Rationale

Inflammatory bowel disease (IBD) requires ongoing management to mitigate symptoms and maintain remission. While medical therapies are central to IBD care, substantial self-management is also required by patients. Existing research often focuses on discrete self-management behaviours, such as medication adherence or dietary adjustments. However, a comprehensive understanding of how patients navigate the daily realities of living with active IBD, and the multifaceted nature of self-management, remains limited. The authors initiated this study to explore the lived experiences of individuals actively managing IBD, identifying the diverse dimensions of self-management beyond standard clinical metrics.

Study Design

This study employed a qualitative descriptive approach utilizing semi-structured interviews. Data collection occurred between March 2023 and October 2023. Participants were recruited from gastroenterology clinics and patient support networks. Interview guides were iteratively refined based on emerging themes from initial interviews. Data analysis involved thematic analysis, a method for identifying, analysing, and reporting patterns within qualitative data. Two researchers independently coded transcripts, reconciled discrepancies through discussion, and developed a codebook refined through an iterative process, ensuring rigour and confirming data saturation.

Patient Population

The study included 30 adult patients diagnosed with Crohn’s disease or ulcerative colitis experiencing active disease symptoms. The median age of participants was 42 years; 17 were female. 22 identified as White, 4 as Black or African American, 2 as Asian, and 2 identified with multiple ethnicities. The duration of IBD diagnosis ranged from 1 to 27 years, with a median of 8 years. Sixty-three per cent were currently receiving biologic therapy, while 37% were on non-biologic treatment regimens. Participants reported varying levels of disease activity, ranging from mild to moderate, and described experiencing a wide range of both gastrointestinal and extraintestinal symptoms.

Key Findings

Analysis revealed five overarching themes related to IBD self-management. ‘Navigating the Unpredictable Body’ encapsulated the constant anticipation and adaptation to fluctuating symptoms and the impact on daily routines. ‘Information Work’ highlighted the substantial effort required to research and evaluate health information, often driven by perceived gaps in clinical care or a desire for greater control. ‘Managing Visible and Invisible Illness’ described navigating the social and interpersonal challenges arising from both the visible symptoms and the hidden impact of fatigue and internal discomfort. ‘Emotional Regulation’ represented the ongoing efforts to cope with the emotional burden of living with a chronic illness, including anxiety, depression, and feelings of isolation. Finally, ‘Resourcefulness’ illustrated patients’ proactive strategies to leverage support networks, access resources, and problem-solve challenges related to IBD management. Participants consistently reported these themes were intertwined, influencing and reinforcing one another.

Discussion

These findings underscore the holistic nature of self-management in IBD, extending far beyond adherence to prescribed medications. The study highlights the significant cognitive and emotional labour involved in living with a chronic, unpredictable illness. The ‘Information Work’ theme suggests a potential role for healthcare providers to proactively address patient information needs and provide curated resources. Addressing the challenges related to ‘Managing Visible and Invisible Illness’ could be achieved through interventions focused on improving communication skills and fostering social support. From a safety and tolerability perspective, the study did not directly assess treatment-related adverse events. However, the themes of emotional burden and the constant need for vigilance suggest that unaddressed self-management challenges may indirectly impact treatment adherence and overall wellbeing.

Authors’ Conclusions

The authors conclude this study demonstrates that IBD self-management signifies a complex and multifaceted process that extends far beyond the biomedical aspects of disease control. Understanding these diverse dimensions is crucial for developing effective patient-centred interventions aimed at improving the quality of life and wellbeing for individuals living with active IBD. Further research is needed to explore how healthcare professionals can best support patients in navigating these complex self-management demands.

Reference

Cohen-Mekelburg S, Hodish G, Ebner D, Resnicow K, Waljee AK, Saini S, Hawley S, Dejonckheere M, Riehl M, Naftaly J, Jagielski C, Henry N, Swalwell K, Higgins PDR, Krein SL. The Multiple Dimensions of Self-Management in Active Inflammatory Bowel Disease: A Qualitative Analysis of Patients’ Daily Lived Experiences. Digestive Diseases and Sciences. 2026; 41(5): 1-13. DOI: 10.1007/s10620-026-09858-x.