Posted by Becky Woolf on February 28, 2022
Lifestyle and IBD is a new web-based toolkit that the Patient Advisory Council (PAC) began working on in early 2020. As COVID-19 impacted the lives of many across the country and the world, discussions about how IBD impacts how patients live became especially important to members of the PAC and the greater IBD community. Seeing a need, we decided to co-produce a resource - for patients, by patients - that could help others by sharing direct patient experiences, patient-developed information, resource links, and professional information and insights.
How is Lifestyle and IBD structured?
After initial discussions, PAC members decided to focus Lifestyle and IBD on the following topics: mental health, treatment, diet, exercise, social life, and general management. Here is a short description of what to expect in each section:
💚 Mental Health: we cover the important themes of resilience, validation, vulnerability, medical PTSD, compartmentalization, self-care, stigma, caring for caregivers, and finding a mental health provider. We were also able to explore the connection between mental health and the gut in what is known as the gut-brain axis.
💙 Treatment: we go over surgery, procedures, and medications. Relevant to the COVID-19 pandemic, we included a section on immunosuppression and prevention of infection.
💚 Diet: we present general guidance and information on identifying diets, supplements, frequent challenges, and adherence. We also share provider perspectives on food insecurity, an often overlooked topic within the realm of IBD care.
💙 Exercise: we share information on athletics and IBD, patient perspectives on exercise, and resuming normal activity after surgery.
💚 Social Life: we discuss the intersectionality of race and ethnicity within IBD; what IBD means in various relationships, and how IBD affects dating, sexuality, and body image. We highlight some personal and professional accomplishments of current PAC members and alumni because these are often overlooked and should be celebrated.
💙 Management: we consolidated various resources to help with general management of IBD including medication reminders, PAC toolkits, tips for making procedures more manageable, and useful multipurpose smartphone apps.
How is Lifestyle and IBD unique?
Lifestyle and IBD is groundbreaking in that it’s our most expansive and collaborative PAC education toolkit to date. It is also the first toolkit we have developed to be web-based and interactive. Our unique, web-based format brings together experiences and insights from dieticians, patients, parents, psychosocial professionals, other clinical providers and ICN community members - offering toolkit users a variety of perspectives to consider in each topic area.
What are our hopes for Lifestyle and IBD?
IBD can impact patients' lives very differently, as well as the lives of family, caregivers, and friends. Through creating and sharing this resource, we hope to:
💚 inspire healthcare teams to explore and embrace the importance of treating the whole patient, by considering and having conversations about the varied implications of IBD on patient lifestyle
💙 provide patients, family, caregivers, and friends with a resource they can use to increase their understanding of the many ways IBD touches the lives of those who live with it
💚 connect with those who feel lonely and unseen, by sharing stories and experiences that resonate and provide value and validation
💙 delve into social justice topics, such as increasing resource accessibility for patients in under-resourced communities, driving conversation and change in ImproveCareNow and the larger healthcare system.
IBD shows up in the lives of patients in ways that are unique to them, and to their family, friends, caregivers, and supporters. While every IBD journey is unique, they are all equally important and valid. Through Lifestyle and IBD we hope to communicate that nuance.
--