Living With Ulcerative Colitis: Exploring Dietary Inflammatory Intake, Physical Activity, and Methods to Manage the Burden of Illness
Date of Award
Open Access Dissertation
Health Promotion, Education and Behavior
Ulcerative Colitis (UC) is a chronic illness under the umbrella of Inflammatory Bowel Disease (IBD). IBD is becoming a global health issue as incidence rates are rising throughout the world. UC is characterized by chronic inflammation and ulcerations in the colon’s mucosal lining due to abnormal inflammatory and immune system responses. Patients with UC experience a range of gastrointestinal and extraintestinal symptoms as well as psychosocial challenges throughout the course of illness that generate a significant burden on daily life. Periods of active disease, or flares, present exacerbations of disease symptoms and the greatest burden on daily functioning, yet disease activity often fluctuates in symptom severity over the disease course and much of the extraintestinal burden continues throughout periods of remission as well. Many of those diagnosed with UC seek out a combination of medical, lifestyle, and/or alternative treatment and management methods in efforts to mitigate disease symptoms, reduce dependence upon pharmaceuticals, and respond to the challenges of living with chronic health condition.
Current literature is lacking sufficient description of how individuals use treatment and management methods on a daily basis and over the disease course, as well as examination of the perspectives, resources, and motivations supporting utilization of various methods. Despite limited evidence to support consistent dietary recommendations for the management of UC, dietary change is a popular selfmanagement method among UC patients. Popular diets currently recommended for UC lack evidence of effective healing of the inflamed and ulcerated mucosal lining of the colon. The Energy-Adjusted Dietary Inflammatory Index (E-DIITM) measures the inflammatory potential of food intake and has never been studied among the UC population. Additionally, physical activity is highly likely to contribute to a reduced burden of illness among individuals with UC, yet few studies have examined physical activity among this population. Recommendations for physical activity among the UC population do not currently exist. Two specific aims were proposed for this dissertation and addressed using two distinct studies.
The specific aim of study 1 was to examine how treatment and management methods are used by individuals who have been living with UC for at least 5 years and how patients make decisions regarding the use of these treatment and management methods for UC. Qualitative data were collected using individual semi-structured interviews addressing the participant’s retrospective illness trajectory, the impact of UC on daily life, experiences with medical and complementary or alternative treatment methods used to control disease activity, methods for self-managing the impact of UC on daily living, and processes of making decisions regarding treatment and management of UC of the course of illness. Eligibility criteria included: 1) diagnosis of UC; 2) duration of illness ≥5 years; and 3) a minimum of one disease flare during the course of illness. Patients (n=21) were recruited in collaboration with a large gastroenterology clinic in South Carolina, a support group for individuals experiencing Crohn’s and UC, an integrative medicine clinic in South Carolina, and through posting study fliers in two UC focused Facebook support groups. Thematic analysis was conducted using NVivo 12 software. Iterative coding led to the organization of meaningful themes and sub-themes across all interviews to capture key elements the participants’ experiences.
The specific aim of study 2 was to examine associations between dietary inflammatory potential, physical activity, and health outcomes associated with the burden of living with UC. Data obtained from participants in the IBD Partners e-cohort who selfreported UC (n=2,052) were analyzed using a cross-sectional, secondary data analysis. Dietary data collected through a National Cancer Institute dietary screener were converted into an E-DIIscore. Physical activity data were collected using the GodinShephard Leisure Time Activity Index. Outcome variables included the Simple Clinical Colitis Activity Index (SCCAI), Short Inflammatory Bowel Disease Questionnaire (SIBDQ), and PROMIS domains of anxiety, depression, fatigue, sleep disturbance, and social satisfaction. Multivariable regression models controlled for age, sex, body mass index (BMI), race, education, diet, physical activity, smoking status, medication class, and disease duration.
From study 1, we observed that decisions are shaped by a patient’s approach towards disease management, personal experiences, sources of information, and individual motivating factors. A driving factor in decision making is personal suffering. Patients are willing to try new methods of management and overlook long-term implications in order to reduce suffering and be able to ‘function’ in the present day. Suffering may motivate long term behavior change, but the majority of participants tend to utilize most treatment and management methods as responses to flares and UC suffering instead of as preventative health behaviors. While patients identify some medications and overall stress reduction as important methods to avoid UC flares, treatment and management methods are predominantly employed as efforts to recover from flares and reduce existing symptoms.
Findings from study 2 showed that pro-inflammatory dietary intake, indicated by E-DII score, was associated with increased disease activity (β=0.166; p<0.001), anxiety (β=0.342; p=0.006), depression (β=0.408; p=0.004), fatigue (β=0.386; p=0.005), sleep disturbance (β=0.339; p=0.003), and decreased social satisfaction (β= -0.370; p=0.004) and IBD-related quality of life (β= -0.056; p<0.001). Leisure time activity was inversely associated with disease activity (β= -0.108; p<0.001), anxiety (β= -0.025; p=0.001), depression (β= -0.025; p=0.001), fatigue (β= -0.058; p<0.001), and sleep disturbance (β= -0.019; p=0.008), while positively associated with social satisfaction (β=0.063; p<0.001), and IBD-related quality of life (β=0.005; p<0.001). The benefit among health outcomes, excluding depression, was greater for strenuous exercise intensity than for moderate or mild intensities. For all outcomes, interaction effects between E-DII and physical activity were not significant.
This dissertation offers added insight into how and why treatment and management methods are used to reduce the physical and psychosocial burden of illness associated with UC. Findings suggest that an anti-inflammatory diet and physical activity are each complementary lifestyle methods that may contribute to decreases in disease activity, anxiety, depression, and fatigue, and improvements in health-related quality of life, sleep, and social satisfaction. Such modalities may aid in managing systemic and localized inflammation associated with UC and reduce the burden of UC on daily living. More research in this area will contribute to creating evidence-based dietary and physical activity recommendations for the UC population. Findings from this dissertation can aid in framing patient education and behavioral interventions that assist patients with UC in adopting and sustaining self-management behaviors to reduce and prevent disease activity. Future research is needed to design and evaluate ways to shift treatment and management approaches away from reactive behaviors and promote preventative self-management.
DuBois, K. E.(2022). Living With Ulcerative Colitis: Exploring Dietary Inflammatory Intake, Physical Activity, and Methods to Manage the Burden of Illness. (Doctoral dissertation). Retrieved from https://scholarcommons.sc.edu/etd/6974