Abstract
Background: Stress significantly affects disease flares and quality of life in people with ulcerative colitis (UC), with over 25% experiencing symptoms
of anxiety or depression irrespective of disease activity.1–3 However, there is limited research on the specific stressors introduced by a UC diagnosis.
This study aimed to explore how stress is experienced following diagnosis and identify contributing factors.
Methods: Ten UK-based patients diagnosed with UC within the past six years (seven within the last year) participated in semi-structured online
interviews exploring stress and coping during their first post-diagnosis year. Participants (7 female and 3 male; aged 16–76) were predominantly white
(n=9). All had elevated scores on Cohen’s Perceived Stress Scale prior to interview.4
The interviews were video-recorded and analysed using Interpretative
Phenomenological Analysis to capture both shared and divergent aspects of their unique lived experiences.5
Results: Analysis revealed a complex and evolving relationship between stress, resilience, and UC, captured in four themes:
I. Rethinking health - Health became effortful and unpredictable, shaped by a tension between personal experience and others’ interpretations
II. Rethinking identity - A lifelong diagnosis disrupted self-identity, social roles, and life plans, often leading to feelings of body estrangement
III. Adapting life - Participants were compelled to adjust their behaviour and daily routines, acquire new knowledge and skills, and rely more on others
IV. Dealing with complex emotions - Emotional and physical health were closely linked, with stress and worry heightening distress but also motivating
efforts to conserve emotional energy and seek positive experiences
Illustrative quotations for each theme are provided in Table 1.
Conclusion: These findings enhance understanding of the stressors introduced by a UC diagnosis and the process by which individuals respond. While
participants developed personal resilience to stressors, the role of others (including healthcare professionals) was pivotal in either alleviating or exacerbating stress. There is a pressing need to improve emotional and practical support for people newly diagnosed with UC and their close networks.
Crucially, the collective knowledge and lived experience of people with UC should be actively harnessed, not only to guide and support those newly
diagnosed, but also to inform and improve clinical practice and wider support services.
References:
Black J, Sweeney L, Yuan Y, Singh H, Norton C, Czuber-Dochan W. Systematic review: the role of psychological stress in inflammatory bowel disease.
Aliment Pharmacol Ther. 2022;56(8):1235-1249. doi:10.1111/apt.172022.
Luo H, Sun Y, Li Y, et al. Perceived stress and inappropriate coping behaviors associated with poorer quality of life and prognosis in patients with
ulcerative colitis. J Psychosom Res. 2018;113:66-71. doi:10.1016/j.jpsychores.2018.07.0133.
Barberio B, Zamani M, Black CJ, Savarino EV, Ford AC. Prevalence of symptoms of anxiety and depression in patients with inflammatory bowel
disease: a systematic review and meta-analysis. Lancet Gastroenterol Hepatol. 2021;6(5):359-370. doi:10.1016/S2468-1253(21)00014-54.
Cohen S, Kamarck T, Mermelstein R. A Global Measure of Perceived Stress. J Health Soc Behav. 1983;24(4):385-396. doi:10.2307/21364045.
Smith JA, Flowers P, Larkin M. Interpretative Phenomenological Analysis: Theory, Method and Research. SAGE; 2022.
of anxiety or depression irrespective of disease activity.1–3 However, there is limited research on the specific stressors introduced by a UC diagnosis.
This study aimed to explore how stress is experienced following diagnosis and identify contributing factors.
Methods: Ten UK-based patients diagnosed with UC within the past six years (seven within the last year) participated in semi-structured online
interviews exploring stress and coping during their first post-diagnosis year. Participants (7 female and 3 male; aged 16–76) were predominantly white
(n=9). All had elevated scores on Cohen’s Perceived Stress Scale prior to interview.4
The interviews were video-recorded and analysed using Interpretative
Phenomenological Analysis to capture both shared and divergent aspects of their unique lived experiences.5
Results: Analysis revealed a complex and evolving relationship between stress, resilience, and UC, captured in four themes:
I. Rethinking health - Health became effortful and unpredictable, shaped by a tension between personal experience and others’ interpretations
II. Rethinking identity - A lifelong diagnosis disrupted self-identity, social roles, and life plans, often leading to feelings of body estrangement
III. Adapting life - Participants were compelled to adjust their behaviour and daily routines, acquire new knowledge and skills, and rely more on others
IV. Dealing with complex emotions - Emotional and physical health were closely linked, with stress and worry heightening distress but also motivating
efforts to conserve emotional energy and seek positive experiences
Illustrative quotations for each theme are provided in Table 1.
Conclusion: These findings enhance understanding of the stressors introduced by a UC diagnosis and the process by which individuals respond. While
participants developed personal resilience to stressors, the role of others (including healthcare professionals) was pivotal in either alleviating or exacerbating stress. There is a pressing need to improve emotional and practical support for people newly diagnosed with UC and their close networks.
Crucially, the collective knowledge and lived experience of people with UC should be actively harnessed, not only to guide and support those newly
diagnosed, but also to inform and improve clinical practice and wider support services.
References:
Black J, Sweeney L, Yuan Y, Singh H, Norton C, Czuber-Dochan W. Systematic review: the role of psychological stress in inflammatory bowel disease.
Aliment Pharmacol Ther. 2022;56(8):1235-1249. doi:10.1111/apt.172022.
Luo H, Sun Y, Li Y, et al. Perceived stress and inappropriate coping behaviors associated with poorer quality of life and prognosis in patients with
ulcerative colitis. J Psychosom Res. 2018;113:66-71. doi:10.1016/j.jpsychores.2018.07.0133.
Barberio B, Zamani M, Black CJ, Savarino EV, Ford AC. Prevalence of symptoms of anxiety and depression in patients with inflammatory bowel
disease: a systematic review and meta-analysis. Lancet Gastroenterol Hepatol. 2021;6(5):359-370. doi:10.1016/S2468-1253(21)00014-54.
Cohen S, Kamarck T, Mermelstein R. A Global Measure of Perceived Stress. J Health Soc Behav. 1983;24(4):385-396. doi:10.2307/21364045.
Smith JA, Flowers P, Larkin M. Interpretative Phenomenological Analysis: Theory, Method and Research. SAGE; 2022.
| Original language | English |
|---|---|
| Article number | jjaf231.1572 |
| Journal | Journal of Crohn's and Colitis |
| Volume | 20 |
| Issue number | Supplement_1 |
| Early online date | 21 Jan 2026 |
| DOIs | |
| Publication status | Published - 31 Jan 2026 |
Keywords
- ulcerative colitis
- stress
- Interpretive phenomenological analysis
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