Perceptive eating as part of the journey in inflammatory bowel disease: Lessons learned from lived experience

Background: Inflammatory bowel diseases (IBD) include ulcerative colitis (UC) and Crohn's disease (CD), incurable remitting-relapsing conditions that impact more than 3 million people in the United States alone. A diagnosis of IBD can be life-altering; patients must make significant adjustments to manage their symptoms, and this may include dietary changes. While diet may impact IBD symptoms and disease progression, there is currently no one diet recommendation for IBD patients to follow. Few studies explored patient beliefs and practices around their dietary intake. Objective: Our objective was to identify patient beliefs, attitudes, and behaviors around diet in management of symptoms and flares in patients with IBD. Methods: We conducted semi-structured interviews with patients N = 16 patients with UC or Crohn's colitis, recruited from an IBD center in a large metropolitan medical center. All patients were referred by their behavioral health provider. Interviews were transcribed verbatim; two analysts coded the transcripts using NVivo software. This analysis examines the themes derived from the questions about diet. Results: The sample of participants in this study (N = 16) was adult patients of the IBD clinic with either UC or Crohn's disease in the colon. Three main themes emerged from our analysis: evolving attempts at controlling symptoms through diet (subthemes: initial attempts to modify diet to control symptoms, and food avoidance was commonly reported but safe foods were not), beliefs about how food affects IBD (subthemes: liquid nutrition rests the bowels, diet for general health is all that is needed for IBD management, and diet is part of IBD management), and perceptive eating. Discussion: Our findings confirmed those from previous studies that patients with IBD do notice that eating certain foods induces symptoms, and controlling dietary intake is one way that they choose to manage symptoms of IBD. Some patients had beliefs about how food affects their IBD, whether by reducing inflammation, or giving the gut rest. We also noted that patients used perceptive eating in their approach to diet by using a combination of experience and knowledge.