IBD Insider program connects and empowers IBD community
Published: March 2, 2021
When those with Crohn’s disease and ulcerative colitis collaborate with physicians for the purpose of patient education, something magical happens. Our perspective and unique personal experiences with IBD resonate on a different level with fellow patients and caregivers because it’s our reality.
The Crohn’s & Colitis Foundation and American Gastroenterological Association recently held their 2nd annual IBD Insider patient and caregiver symposium in January. During the live virtual event, I had the honor and responsibility of not only moderating the discussion but speaking alongside two other patient advocates and four gastroenterologists. Our main mission was to create a meaningful discussion and elaborate on key topics from this year’s Crohn’s & Colitis Congress®.
The planning process
When I was invited back in October to participate as a patient advocate, I was excited and anxious to be a part it all. Parsa Iranmahboub, Chealynn Feaster, and I were asked to volunteer our time and to share our invaluable viewpoints that come with years of living with IBD. Our experiences as patients served as the building blocks for the program. There’s something to be said about when patient thought leaders have a seat at the proverbial table alongside medical providers. Not only do patients get the chance to work alongside leading physicians in the field of IBD, they also get to help give providers a behind the scenes look into the concerns and struggles many in the patient community face but may have difficulty articulating during a routine appointment or in the midst of a flare.
From the start, we explained that COVID-19 as it relates to the IBD community would need to be front and center. Since March 2020, there have been so many questions and so much uncertainty about how at-risk those with Crohn’s and ulcerative colitis are, especially patients on immunosuppressant drugs. While addressing those needs, we also felt it was imperative that people felt empowered to make the most out of their time with their care team as well as that they know that there are several new treatments are being researched. When I started my biologic in 2008, I had two options—infliximab (Remicade) and adalimumab (Humira). Now in 2021, there are many more options and promising advancements on the horizon to help address the needs of patients who have yet to be able to reach remission or an improved quality of life.
Patient and provider collaboration
Drs. Brigid Boland, Aline Charabaty, Rajeev Jain, and Jami Kinnucan teamed up with us to create presentations that included their medical expertise and guidance, along with the personal anecdotes and experiences from us patients. The program was not only conversational, but genuine and heartfelt. When I gave my closing remarks off the top of my head, I could see the physicians nodding their heads with tearful eyes and giving me a thumbs up. It meant a lot to have their support not only during the program but afterwards on social media.
When I speak in these moments, I try to be the voice I desperately needed to hear as I came to grips with my diagnosis. I try to make that newly diagnosed person see the forest through the trees for themselves. I try and comfort that mother who is devastated about her child’s diagnosis and let them see firsthand that their loved one can still lead a very full life, despite their illness. I try and show that there’s more to life than IBD and that our conditions are a part of us but not all of us.
Hope for the future
Even though I’ve been a patient advocate for about five years, I still think back to who I was the first 10 years of living with Crohn’s. I suffered in silence. I didn’t share my struggles with anyone but close family members and friends, and even then, I tended to downplay and sugarcoat my experiences. I never dreamed I’d one day be speaking about my patient journey so candidly to nearly a thousand strangers. I felt such an adrenaline rush being able to use my voice to hopefully comfort and guide others.
The pandemic has made life with a chronic illness especially challenging and isolating. IBD Insider helped to address some of the key areas of interest and the most asked questions about everything from making the most of your telemedicine appointment to the importance of those with IBD getting the COVID-19 vaccine once it’s available to them. Other key areas of focus revolved around what’s coming down the pipeline in terms of medication and treating IBD along with the role diet plays in how we manage symptoms and quality of life. The positive feedback received from those who attended the seminar live and who watched after the fact felt the topics were educational and beneficial to their needs.
There were several key takeaways from the symposium. The first being hope. Whether it’s advocating for yourself at appointments, learning about therapies that will be available in the future, or finding out how those with IBD have faired thus far with COVID and that we can and should get the vaccine, there’s promise that the days ahead will be brighter. Second, that patients and caregivers should feel empowered by the strength of our community. Patients, caregivers, and providers are easily accessible thanks to social media, and we all have the same goal and mission in mind—to improve quality of life and thrive despite the challenges IBD presents. Lastly, that you are not alone in your fears, concerns, and worries. Hearing patient viewpoints about navigating childhood, college, career, love, and family with IBD sheds light on the fact that Crohn’s disease and ulcerative colitis can try and rob us of major milestones, but it doesn’t need to. Just as medicine and treatments develop as the years go by, so does an individual’s patient journey. With time comes clarity, growth, and perspective.
Feedback from the event was overwhelmingly positive:
"I signed up for the IBD Insider: Patient Updates from the Crohn’s & Colitis Congress® and just want to thank all of you for the outstanding presentation...My husband and I watched the entire presentation, and we were so impressed, encouraged, and emotional with everything we were seeing and hearing. So, THANK YOU for all you do!!! It calmed many of our fears (especially the side effect fears) and gave us hope that we can get through this and that others understand and are working hard to develop and create safer and more effective treatments for these debilitating illnesses. I just wanted to let all of you know how valuable that meeting was and how much it means to people that are living with these conditions. Please keep doing what you’re doing. You ARE making a difference!”
“I tuned into the IBD Patient Insider seminar and wanted to say thank you to the patients for sharing their stories! The words really touched my heart, and it was so wonderful to hear what you all had to say. Thank you for the great work you do to raise awareness for the IBD community.”
“You were all AMAZING and encouraging today! Thank you. You made me cry at the end…in a good way! My 15-year-old son was recently diagnosed with Crohn’s and it has rocked our world. After listening to IBD Patient Insider, I am encouraged and empowered. Thank you!”
The IBD Insider program serves as a great opportunity for not only the newly diagnosed but “veteran” patients like me to feel seen and be heard. It also gives caregivers insight into how they can help their loved one or friend cope with life with Crohn’s and ulcerative colitis. A diagnosis of IBD can feel doomsday and is overwhelming to most on many levels.
Learning opportunities like IBD Insider, that bring our community together both near and far over Zoom, show us there is strength in vulnerability. It’s empowering to speak up about your journey. People care. People want to listen. Once you dip your toe in the water and decide to take the plunge into seeing yourself as more than “just” a patient, but a person who is deserving of a full quality of life, you open yourself up to a world of support and a community that will embrace you wholeheartedly.
Natalie Hayden is a writer for the Crohn's & Colitis Foundation. She is a Crohn's patient and writes the blog Lights, Camera, Crohn's: An Unobstructed View.