My name is Leah, and I am a parent on the ImproveCareNow Parent/Family Advisory Council (PFAC) with two children diagnosed with Crohn’s disease. In 2016, our world turned upside down when both our children were diagnosed with IBD. We were nervous, scared, and overwhelmed facing not one but two Crohn’s diagnoses. Our wonderful GI, Dr. Suskind, discussed various treatment options, one of which included a dietary therapy approach that he had been newly researching called the Specific Carbohydrate Diet (SCD). I went home from the hospital armed with food lists and determination and got started right away on a new way of cooking.
My kids were young when our journey with nutrition therapy began, and I’m not going to pretend it was easy. I had resources from the hospital and support online, and I relied on both. Within six weeks, both my kids’ calprotectin levels dropped significantly – one down to the normal level – and we never looked back. For the past 10 years, the SCD has remained a foundational part of our IBD treatment journey.
Over the last decade, I have experienced many of the challenges families using nutrition therapy face, including day-to-day decisions about nutrition, meal planning, food prep, and maintaining quality of life. My family was extremely lucky to have a supportive GI and local community. We attended SCD cooking classes at Seattle Children’s Hospital with Dr Suskind and my kids got to meet other kids just like them, which reminded us all that we aren’t alone.
I’ve experienced firsthand how powerful community and accessible resources can be for families navigating IBD! That sense of community led me to get involved with the ICN PFAC. Together with the GI Nutrition Foundation we have created an online Cooking Demo Series and are excited to help bring that same sense of community connection to more families – we hope you will join us!
While strict dietary therapy, like the SCD, may not be the right approach for every IBD patient and family, I think we can all agree that nutrition matters. No matter what eating style your family follows, there’s a place for you in this space. Let’s come together to create community, hear from experts in GI and nutrition, discover new recipes, and have fun along the way.
Everything we do in ImproveCareNow is magnified by the efforts of thousands of improvers! No action is too small; here are some ways to get started:
💚 Join the Patient Advisory Council (pediatric patients with IBD who are 14+)
💙 Join the Parent/Family Advisory Council (parents/caregivers of young people with IBD)
💚 Participate in our Current Research Opportunities (subject to eligibility)
💙 RSVP to join us at one of our upcoming ICN events
💚 Subscribe to blog updates to stay #InTheLOOP with our IBD stories
💙 Download, use & share our free, co-produced IBD resources
💚 Connect with our welcoming & supportive pediatric IBD community and receive IBD resources, community stories, and ICN updates & opportunities
💙 Donate to ImproveCareNow – we are proud to use every dollar donated to advance our mission!
Our mission is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.
