LOOP Blog

On Rhys' very first day home from the hospital, his Mom and Dad knew something wasn't right. This is Rhys' story in his Mom, Colby's words.

If you are a young person living with Crohn’s disease or ulcerative colitis, or a parent/caregiver supporting one, you know that the reality is that managing a chronic health condition is complex. On any given day, you might be juggling appointments, managing symptoms, remembering medications, and finding the right tools to stay on track.

Have you ever wondered if the apps, resources, and community support you use actually make a measurable difference in your ability to manage your health? The CLARE Study (Community Learning About Results of Engagement) is on a mission to find out—and we need your voice to do it.

Parenting a child with a chronic illness like Inflammatory Bowel Disease (IBD) can feel isolating for both the child and the caregiver. While the love and support of family and friends are vital, connecting with others who truly "get it" offers a unique and powerful kind of support: peer support. The Caregiver Coping Resource emphasizes the immense value of supportive connections for both children and their families.

As PAC member, Leela, wrote in her introductory post to the ICN blog, "It makes me feel more confident knowing that I'm not the only one struggling and there are other people like me." Support and connection that allows people to express themselves, to be seen and understood, and to feel less alone is so important. In the interest of ensuring everyone looking for connection and support along their IBD journey can access it, we are highlighting IBD Kidz - a Crohn's & Colitis Foundation program offering "age-appropriate support groups just for kids and teens living with IBD. These groups help young patients connect with peers, feel less alone, and gain confidence in managing their condition.”

Meet Desiree and read her story about the role stories and storytelling have had in her chronic illness journey, and how she plans to use them to advocate for others living with IBD.

It’s been nearly a decade since the first time I spoke as a patient advocate within ImproveCareNow. Joining ICN’s Patient Advisory Council (PAC) has given me a platform to share my story and vision for the future of IBD care. I have had the privilege of being in the PAC for over five years, serving as a PAC Co-Chair, and in my current role representing patients on ICN’s Board of Directors. This entire time, my patient advocacy has been for a medical audience, whether that be members of our ICN community or other learning health networks.

Recently, I had the opportunity to extend my patient advocacy to the policy world in hopes of making an even greater impact.

As 2026 begins and we wrap up another year together, let's pause and reflect on how our community of patients, caregivers, clinicians, researchers, collaborators and improvers continues to share seamlessly. Join us in recognizing and celebrating some of the wonderful resources and lived experiences shared by our community in 2025!

This was our version of an "ICN wrapped" and we initially shared it with our CIRCLE eNews list. Folks quickly let us know they liked it and found it useful so we decided to share it #InTheLOOP with the hope that it will reach even more people 💚💙

@ICNPatients collaborated with the ICN Social Workers & Psychologists (SWAP) group to create and share information about medical traumatic stress, including common symptoms, potential causes, coping strategies, advocacy statements, and a resource list. Take a PAC Moment to learn about medical traumatic stress from the patient perspective.

We are thankful for every story shared by our ICN community members! It is our hope that as more people stay #InTheLOOP with our posts, together we can:

💚 continue to bring critical awareness to chronic illnesses (like Crohn's disease and ulcerative colitis) that can be misunderstood because they are not always visible

💙 encourage people to connect with each other, to share information and support, so no one feels alone on their IBD journey

💚 build passion and momentum for our shared work of improving health & care of young people living with IBD

💙 keep the lines of communication open so we can all feel empowered to keep #TalkingAboutIBD

We look forward to sharing even more stories and perspectives in 2026. If you would like to share your story with us, here is a form you can complete or you can always contact us via our website.

In Imperfect, and still OK - Nutrition is Trial and Error, Marta reflected on partnering with pediatric IBD patients and their families to find a balance between following dietary "best practices" and holding space for kids and teens to learn and develop their own food autonomy through trial and error. In this follow-up post, Marta expands on how teens can still be OK even when their diet isn't "perfect," and gives some tools and techniques to build and reinforce balanced eating habits that can be sustained for a lifetime.