Abstract
Abstract Background Patients with Ulcerative Colitis (UC) experience a range of gastrointestinal and extraintestinal symptoms that generate a significant burden on daily life. For the majority of individuals with UC, pharmacotherapy is insufficient to maintain a ‘normal’ lifestyle. Many of those diagnosed with UC seek out complementary or alternative treatments and undertake socio-behavioral and lifestyle adaptations to self-manage disease symptoms, reduce dependence upon pharmaceuticals, and respond to the challenges of living with chronic illness. The purpose of this qualitative study is to describe patient perspectives and experiences with UC treatment and self-management methods. Methods Qualitative data were collected using individual semi-structured interviews to obtain in-depth data reflecting the perspectives and experiences of individuals with UC on treatment and self-management of symptoms. Patients were recruited in collaboration with the Prisma Health Gastroenterology department in Greenville, SC and the Carolina’s Crohn’s and Colitis support group. Eligibility criteria included: 1) diagnosis of UC; 2) duration of illness ≥5 years; and 3) a minimum of one disease flare during the illness trajectory. Interviews were audio recorded and transcribed. Thematic analysis was conducted using NVivo 11 software. Results All participants reported active involvement with a gastroenterologist for disease management and progressive use of medications over the course of their illness in response to disease flares. Most participants identified stress reduction as beneficial to managing their UC. All participants discussed diet as a method to manage their UC. The majority of participants spoke about foods as culprits for symptom incidents. Other participants described dietary intake as essential in managing the severity of their UC and overall well-being. Patients who expressed need for formal mental health treatment perceived little support or assistance among gastroenterologists. Patients who underwent colorectal surgery described a continuing need to self-manage gastrointestinal symptoms. Discussion Patients expressed reliance on physicians for pharmaceutical treatment, yet identified diet restrictions and stress management as a main approach for self-management of UC. Framing patient education on how diet, stress management, and other health behaviors improve immune system functioning may lead to greater long term adoption of health behaviors and improved health outcomes among individuals with UC.
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