Living with inflammatory bowel disease: Bodily and social responses to illness

The purpose of this interpretive study was to understand how persons live with inflammatory bowel disease (IBD). The study drew on the phenomenological understanding of the body in health and illness and nursing scholarship on embodiment. A convenience sample included 8 adults with either Crohn's disease or ulcerative colitis. Data collection consisted of three semi-structured interviews with each participant over a 4 to 8 month period. The first interview elicited the participant's understanding of the illness. Two subsequent interviews asked participants to provide detailed accounts of recent meaningful and difficult situations encountered in living with IBD. Three interpretive strategies were used to analyze the data: thematic analysis, identification of exemplars, and identification of paradigm cases.; Three themes emerged from the data: relationship to IBD, skilled bodily response to IBD, and coping with IBD. With respect to the first theme, three patterns of relating to IBD were discovered: an adversarial relationship with the illness, an attuned relationship with the illness in the background, and an attuned relationship with the illness in the foreground. For participants with an adversarial relationship to IBD, the body took on an alien presence and the illness intruded into the participant's life. Participants with attuned relationships with IBD incorporated IBD as an aspect of the self and were able to participate in meaningful activities. Common sources of illness-related stress and responses to stress were also identified. Listening to the body influenced the participants' pattern of relating to the illness and the participants' response to illness-related disruptions. Listening to the body allowed participants to skillfully respond to the illness. Development of a habitual skilled body allowed the illness to move into the background and the body to recede and regain transparency.; This study indicates that health care professionals need to promote the development of body listening to assist patients to more skillfully manage illness. It also supports the need for health care providers to listen to their patients with IBD and acknowledge the patients' bodily knowledge and practical expertise in illness management. Further research is needed to explore the development of skilled bodily responses to IBD.