Introduction Fatigue is one of the main symptoms of inflammatory bowel disease (IBD), however, little is known about specific areas of life affected by fatigue, its pattern over time or how people with IBD manage it.1This study aimed to address this shortfall in evidence.
Method Descriptive phenomenology with face-to-face in-depth interviews. Twenty participants diagnosed with IBD and reporting fatigue were purposively selected. Interviews were audio-recorded, transcribed verbatim and analysed using Moustakas’ method,2which involves seven steps and analyses data at two levels: i) textural level – which generates a description of the phenomenon, ii) structural level – which describes underpinning factors and their relationships with fatigue.
Results Participants found fatigue difficult to describe and used different terms, metaphors and similes to describe their experience. The terms fatigue, tiredness and exhaustion were used interchangeably. Fatigue was described as ‘heaviness of the body and fuzziness of the brain’ with a constantly fluctuating pattern and severity. The invisible and fluctuating nature of fatigue makes it difficult for patients to describe to others.
Fatigue was perceived to impact on all aspects of daily functioning. Participants spoke of being trapped in an unreliable body, which made them feel angry, frustrated, isolated and depressed, and lead to loss of self-confidence and identity.
Physical, psychological, cognitive and situational factors were perceived to contribute to fatigue. Different methods to manage fatigue were attempted by participants (e.g., sleep and rest, pacing, energy preservation, exercise, stress reduction, help seeking), but few were used systematically, possibly resulting in their apparent limited effectiveness.
Conclusion Fatigue is a complex symptom (both multi-causal and multidimensional) and reduces quality of patients’ lives. Patients need to be informed that fatigue is part of IBD, and they need advice on how to manage it, encouragement to report it and to seek help when needed. An algorithm for assessment and management of fatigue could provide a more structured approach to the care of people reporting this troublesome symptom.
Disclosure of interest W. Czuber-Dochan Grant/Research Support from: Big Lottery Fund in collaboration with Crohn’s and Colitis UK, Speaker Bureau of: Dr Falk Pharma UK, Ferring, J. Armes: None Declared, E. Ream: None Declared, C. Norton Grant/Research Support from: Big Lottery Fund in collaboration with Crohn’s and Colitis UK, Speaker Bureau of: Ferring, Shire.
Czuber-Dochan W, Ream E, Norton C. Review article: description and management of fatigue in inflammatory bowel disease. Aliment Pharmacol Ther. 2013;37(5):505–516
Moustakas C. Phenomenological research methods. London: Sage, 1994