LOOP Blog

“We must find time to stop and thank the people who make a difference in our lives.” – John F. Kennedy

As a parent, advocate, and self-described IBD "researcher," Inbal has been on the front lines of her family’s IBD journey for a decade. But this isn't just one story, it’s two. Inbal's family has navigated two separate Crohn's disease diagnoses, years apart: one for her younger son in the pediatric system and one for her older son as a young adult. This gave her a unique, firsthand view of the striking differences between the two healthcare worlds. In this insightful Ignite Talk, Inbal shares her lived experience…the fear, the advocacy, the care, the community, the systems that worked, and the ones that failed, to show us the importance of sharing lived experiences and coming together. Her message is a vital one: the healthcare system must learn from families, not just about them, to bring this kind of supportive care to every IBD patient.

Be inspired by Inbal's #IgniteTalk 🔥

This summer, ICN staff invited community members to respond to the prompt "What ICN means to me..." and then mashed up the responses into a fun 3-minute video that was shared at our Fall 2025 Community Conference in September.

Meet Antonio and read his story about growing up with Crohn's and how it has evolved from a burden into something that is inspiring a future career in medicine.

Tune in as Caitlyn and Fionna chat with professional runner, Grayson Murphy (@racin_grayson) about running (and really all athletic pursuits) and IBD.

In this two-post series, ICN Registered Dietitian, Marta, reflects on working with patients with IBD and their families around establishing a balance between following dietary "best practices" while holding some space for kids and teens to learn and develop their own food autonomy through trial and error.

We are excited to be hosting our Fall 2025 Community Conference in Orlando, Florida from September 17 to September 19. We look forward to engaging with healthcare providers, patients, parents/caregivers, researchers and improvers from across ImproveCareNow to all teach and all learn, to share and develop new and innovative approaches to improve pediatric IBD care and outcomes, to further our research, and to build our community. Download our draft agenda to check out topics and sessions for this event ⬇⬇

Little is known about how young women with IBD make decisions about reproductive health topics, including birth control, pregnancy, and period symptoms, and about how they prefer to learn about these topics.

When a child is diagnosed with Inflammatory Bowel Disease (IBD) and/or Autoimmune Liver Disease (AILD), everyday life can feel completely upended. Doctor visits, flare-ups, and unexpected hospital stays often interrupt routines, making it hard to keep a sense of normal. But holding on to simple expectations, like going back to school after summer break or helping with chores at home, can give children the comfort of stability. Finding that balance between compassion and structure not only helps kids feel more grounded but also supports the well-being of the whole family.

Chapters 9 and 12 from the Caregiver Coping Resource highlight how maintaining routines and balance at home can support children, while also offering caregivers practical tools and strategies to navigate daily life with greater ease and confidence.

Hi! My name is Isabella, and I was diagnosed in October of 2023 with Crohn's disease. I began my treatment with Remicade infusions which helped bring my inflammation levels down. Unfortunately, I was still experiencing symptoms caused by a stricture in my ileocecal valve. This led me to visit a dietitian who recommended a dietary therapy called the Specific Carbohydrate Diet (SCD). With the SCD, I saw extreme symptom improvement and began to live a life free from the daily struggle of sickness and stomach aches. In June of 2024, I also underwent an ileocecal resection to remove all stricturing. Since then, I have been in total remission, and living a happy and healthy life, enjoying hobbies such as cooking, volunteering in my community, working at a local children's salon, and spending time with friends!