LOOP Blog

It can be tempting to use a chronic illness as a shield, but what happens when you choose participation over avoidance? For a long time, Justin found himself caught in the "blame game," using Crohn's disease as a "get out of jail free card" to excuse everyday challenges like oversleeping or missing college deadlines. This avoidance ultimately led to a mindset where he felt less capable in school, life, and his relationships because of his IBD. At our Spring 2026 Live Online Community Conference, Justin spoke about his realization that to move forward, he needed to stop blaming a part of himself he couldn't change. Instead, he chose to get involved with ImproveCareNow and the Patient Advisory Council (PAC), who helped Justin transform into a motivated and outgoing advocate. Through this active participation and his choice to help others, he discovered just how capable he truly is, finding success both as a PAC Co-Chair and in his collegiate endeavors. His #IgniteTalk is a powerful reminder that while we cannot change an IBD diagnosis, choosing to put away the blame game can help us realize our true potential.

Be inspired by Justin's #IgniteTalk 🔥

Sleep disturbance, pain, anxiety, depression, and fatigue are prevalent in adolescents and young adults with inflammatory bowel disease (IBD). These symptoms often present in co-occurring sets, known as symptom clusters. We aimed to identify distinct symptom clusters and factors associated with symptom profiles in adolescents with IBD.

Healthy nutrition is more than what’s on our plates, it’s often a lifeline, a form of empowerment, and a source of hope for families navigating chronic health conditions.

On May 19 the ImproveCareNow community celebrates World IBD Day as a dedicated time for #TalkingAboutIBD to raise awareness for invisible illnesses like Crohn’s disease and ulcerative colitis, break down isolation, and advocate for improvements in care and outcomes. Empowering those in our community who speak up, ask questions, and share their powerful personal narratives and lived experiences helps us all move toward a fuller understanding of how IBD shows up and affects the lives of people living with it. Today we would like to highlight how deeply this collaborative sharing drives our research, by highlighting a selection of our recent ICN Research Explained blog posts, which have been coproduced by parents and researchers. By making clinical research accessible to all, we reinforce the vital connection between community insights and medical advancements. Ultimately, World IBD Day is an active invitation for patients, families, clinicians, and researchers to work side-by-side to co-design the best standard of care and improve outcomes for kids with IBD.

These highlights provide a glimpse into the research, if you find a study that interests you, be sure to click on "Get #InTheLOOP" to read the full summary and insights.

Pediatric patients with active and quiescent inflammatory bowel disease (IBD) have known fatigue, but there is limited understanding of how fatigue is clinically assessed. This study explored perspectives of pediatric IBD patients and healthcare professionals (HCPs) regarding fatigue assessments.

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.

Our Spring Live Online Community Conference (LOCC)is right around the corner - on Thursday, April 23, 2026. ImproveCareNow's Executive Director Becky Johnson Rescola speaks to why she's excited for this year's Spring Conference and shares more about our plenary speaker, community proposed sessions, and lunch & learn opportunity! Read her reflections below and be sure to join us as sessions run from 10 AM ET (9 AM CT, 8 AM MT, 7 AM PT) to 5 PM ET.  Registration is completely free for patients and families, and rates have been reduced for our care center partners. Whether you can join us for one hour or the full day, you’ll walk away with actionable insights and a stronger sense of community.

On Thursday, April 23, 2026 ImproveCareNow is hosting our Spring Live Online Community Conference (LOCC). Sessions will run from 10 AM ET (9 AM CT, 8 AM MT, 7 AM PT) to 5 PM ET. This isn't just a meeting; it’s a space designed for you to connect with a national network of IBD experts and peers who truly 'get it.' Best of all, registration is completely free for patients and families. Whether you can join us for one hour or the full day, you’ll walk away with actionable insights and a stronger sense of community..