ImproveCareNow Ibd


I wanted to share my family's experiences and see how I can help other IBD families

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.


Our top 10 blog posts of 2022

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.


Episode 32 of the imPACt podcast - What Patients Need From Providers with SWAP

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.


IGNITE - My friend...IBD

What if your closest friend had a habit of interrupting your plans and not listening when you begged them to stop? You might might wish to end that friendship. But, as Mahalakshmi points out in her #IgniteTalk, which she shared at both our in-person and our virtual community conference this fall, when "friend" is really a metaphor for IBD there isn't really a choice. 

Be inspired by Mahalakshmi's #IgniteTalk 🔥 


Professor NiMBAL is helping IBD patients and their families get better care

David Suskind, MD is an IBD clinician and researcher, as well as physician leader of ImproveCareNow at Seattle Children's Hospital. At our Fall 2022 Community Conference, Dr. Suskind shared the Professor NiMBAL comic, which presents important information about Crohn's disease and ulcerative colitis in a way that is easy to digest and feels less scary. Read more about how the comic came to be as Dr. Suskind answers our Challenge, Choice, Outcome interview questions.


Episode 30 of the imPACt podcast - High School, College, Grad School & IBD

Join me (Vanessa), Hannah and Fionna for our conversation about IBD during different stages of schooling. Between the three of us, we have lived experiences with both Crohn's disease and ulcerative colitis, with being diagnosed at different life stages (during early education and in high school) and with balancing high school, college and grad school with IBD.


Episode 29 of the imPACt podcast - Why Storytelling Matters

“If you just sit and give folks a list of facts, they can debate those facts or try to refute them. They can't debate your story. Because it's your story." - Chris Keck on the imPACt Podcast 

Join me (Vanessa), Becky and Fionna for our conversation with Chris Keck from ImproveCareNow. We discuss storytelling - particularly personal narratives - and why stories matter.


Episode 28 of the imPACt podcast - IBS in IBD

IBS (irritable bowel syndrome) and IBD (inflammatory bowel disease) are different disorders that intersect sometimes. Join Shira and I (Maddie) as we share our experiences and talk with Carlo Di Lorenzo, MD about IBS, IBD, and the complex and fascinating interactions between the brain and the gut.


Episode 27 of the imPACt podcast - Mental Health and IBD Flares

Welcome to the second episode in a 3-podcast series we're doing in collaboration with the ICN SWAP group (SWAP stands for Social Workers & Psychologists). In this episode, you'll hear me (Ryleigh) and my fellow PAC member Avery talking with Lauren Potthoff, PhD - an IBD psychologist at Lurie Children's in Chicago - about mental health during IBD flares.


Episode 26 of the imPACt podcast - IBD and Medical Trauma

Join me (Autumn), Henry & Samantha for a conversation about medical trauma in IBD with ICN SWAP (Social Workers & Psychologists) group members Dr. Jennie David (licensed clinical pediatric IBD psychologist) and Dr. Alexandra Fuss. We are honored to have them join us to discuss this important topic.


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