LOOP Blog

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!

February 6-10, 2023 is Feeding Tube Awareness Week! I think it’s very clever to have something like this because it seems like most people are ashamed or feel insecure when having a feeding tube; it shouldn’t be like that. A feeding tube isn’t an embarrassing thing to have. We should be grateful to have such a thing when we need it, so we don’t get even more sick.

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 I (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.

My name is Stacy and I am Co-Chair of the Children's Mercy IBD Patient Family Advisory Council (or "IBD PFAC" for short). I have twin boys and one of them is a patient of the Children's Mercy IBD Clinic. An interesting fact about me is that I am also an RN and I have worked for the Veteran's Hospital Administration for the past 17 years.

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.