Imagine being diagnosed with a chronic illness in the midst of a global pandemic and lockdown. How does a young person develop resilience and thrive when facing incredible health challenges in isolation? How can they connect with people who understand, who can normalize IBD and offer support and validation about experiences that are still very stigmatized? Not only was Hannah able to develop resilience (on her own terms) and thrive (in the face of difficult surgeries and complications), she also found a community in ICN and the PAC and has grown into an incredible patient advocate. In her #ICNCC23S Ignite Talk, Hannah shares the story of her diagnosis, what resilience and community mean to her, how asking questions and getting to know patients can open the doors to more inclusive and whole-body care.

Be inspired by Hannah's #IgniteTalk 🔥

In November of 2021, I was diagnosed with IBS or irritable bowel syndrome. I had an uninvited, new irritable friend that became a part of my daily life, just like my IBD. Leading up to being diagnosed, I had been experiencing gut-wrenching belly pain, nausea with pain, and fluctuations between painful constipation and uncontrollable and very urgent soft stools. I knew something wasn’t right. I had experienced fluctuations of stool type from my IBD, but this time it was different. 

I'm 19 years old, and I have Crohn's disease. I was diagnosed in 2012 when I was eight years old. One interesting fact is that I know how to surf even though I'm from West Virginia. I struggle the most with not letting Crohn's consume my life.

I have been surrounded by medications and taking pills my whole life. Between being diagnosed with Crohn’s disease at six years old and being diagnosed with IBS recently, with all the different medications I have to take every day and have had to try - feeling overwhelmed is an understatement!

Maddie is joined by pediatric gastroenterologist David Suskind, MD and IBD-specialized dietitian Kim Braly, RD for a podcast about diet, nutrition, the gut microbiome, and how it all relates to Inflammatory Bowel Disease.

The moral of the story in episode 35 of imPACt is: don't do what Becky did. 

We've been getting to know ICN staff members through our imPACt ImproveCareNow network series (last time we talked with Chris Keck about why storytelling matters). In this episode, join Caitlyn, Vanessa and Fionna for a chat with Sydney Bogardus who supported the PAC and the PFAC (Patient/Family Advisory Council) for several years before taking on another role in ICN.

LOOP is an important place for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, build confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

So far, in 2022, 41 stories have been published by patients, caregivers, clinicians, collaborators, researchers, staff & leaders from across the ICN community sharing their unique perspectives on and experiences with IBD. Our top stories this year have covered a variety of topics, including: research on diet and fatigue, innovative IBD projects, new member introductions and top tips for newly-diagnosed patients, conversations about medical trauma, collaborating with IBD caregivers, and gratitude for leadership and learning together so we can all improve the health and care of people living with IBD.

Autonomy means being in control of your own decisions. For pediatric patients living with IBD, there comes a time when you get to start making decisions about your health and care more on your own. Join me (Hannah), Leela, Kera, Fizza and Ryleigh for a chat about patient autonomy in IBD care.

We are excited to welcome back former PAC co-chair, Dr. Jennie David (now a licensed pediatric IBD psychologist) as a host for this episode of imPACt. During episode 32 we talk about whole person care in IBD and get to ask a psychologist, social worker, and medical provider (nurse practitioner) how they came to work in pediatric IBD and how they learned about the mental health components of IBD.