LOOP Blog

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!

It’s kind of fun to do the impossible – Walt Disney

I’m here to make an admission – I love Walt Disney World. I never visited as a child and never really had a desire to visit Disney World until I felt that parental pressure to take my kids. And on that first visit – I was hooked! I loved the magic and escape. Disney is fundamentally designed to innovate, inspire, and ignite – all through bold imagination. Therefore, I am thrilled that my first community conference as Executive Director will be taking place in Orlando!

Hi everyone. My name is Elizabeth and I've been a member of the Patient Advisory Council (PAC) for about a year now. I'm excited that I will soon be serving the ICN community as PAC Co-Chair! Here's a bit about me and what I hope to work on during my time co-leading the PAC, and what I see as my main challenge. 

Caring for a child with Inflammatory Bowel Disease (IBD) or Autoimmune Liver Disease (AILD) can be demanding, and caregivers often put their own needs last. Chapter 4 of the Caregiver Coping Resource reminds parents and caregivers that taking care of yourself is not a luxury—it’s a vital part of caring for your family. Coping with stress and emotions is a skill that takes time and practice. Through personal stories and expert insights, this chapter offers encouragement and practical strategies to help you rest, seek support, and strengthen your emotional well-being.

Before joining ImproveCareNow in June 2025, Becky Johnson Rescola served as Senior Vice President of Education and Community Engagement at the Crohn's & Colitis Foundation. Throughout her 15-year tenure with the Foundation, she has led community-based patient and professional education, patient/caregiver support groups, healthcare professional engagement, community-based equity programs, and Camp Oasis. She has worked with many institutions, clinical professionals, and families across the pediatric IBD community throughout her career.

Get #InTheLOOP with ICN's new Executive Director 💫

In this post, ICN Registered Dietitians provide an overview of Avoidant/Restrictive Food Intake Disorder (ARFID), including information on what ARFID is (and is not), how it is diagnosed and treated, how prevalent it is and what better recognition of ARFID might mean for the pediatric IBD population. In collaboration with the ICN Social Workers & Psychologists group, ICN RDs share tips on what to do if you are concerned about ARFID.

For families navigating the complexities of chronic illness, Maggie's story offers a powerful reflection. Before her Crohn's diagnosis at sixteen, Maggie, a vibrant "theater kid," found solace and strength in the Hamilton lyric: "I am the one thing in life I can control." This deeply personal belief in her independence was profoundly challenged when her own body became unpredictable. What happens when the very foundation of self-reliance is shaken by an illness that defies control? At our Spring 2025 Live Online Community Conference, Maggie bravely shared her journey, offering insights into adapting to a new normal, redefining strength, and discovering that true resilience often lies not in control itself, but in the courageous choice of how to respond when life takes an unexpected turn. Her story is a testament to the power and resiliency of the human spirit within our shared chronic illness community.

Be inspired by Maggie's #IgniteTalk 🔥