LOOP Blog

The summer of my son’s diagnosis was one our family will never forget. While backpacking in California, my then 16-year-old son developed severe, life-threatening diarrhea. This would ultimately lead to a diagnosis of Inflammatory Bowel Disease (IBD) and within 18 months my son would have a total colectomy. We ended up at an ImproveCareNow care center - Children’s Healthcare of Atlanta/GI Care for Kids – and the rest is history as they say. Except that “history” has been long, overwhelming, saddening, frustrating, hopeful, and inspiring, full of questions.

Looking back over the journal I kept during my son’s diagnosis, I am reminded of what was missing - information for the caregiver.

When I was diagnosed with Crohn’s disease at 12 years old, I was inundated with thoughts and feelings about my new diagnosis – what did it mean, why did I need to take medicine, what did a chronic illness mean for my future, how was I going to learn to swallow pills? I was – understandably and developmentally-appropriately – focused on my own coping with a new illness as a young person. I remember feeling frustrated and impatient with my very supportive parents when they prompted me to take my new medication; I cried and was obstinate often in those early weeks and months, with my parents’ support unwavering and steadfast. My mom was my advocate and champion, she always made sure my voice was heard during medical visits. My dad helped me to feel less alone, including a sincere offer to also have an NG (nasogastric) tube placed when we considered enteral therapy.

On Thursday, April 24, 2025 ImproveCareNow is hosting our Spring Live Online Community Conference (LOCC). Sessions will run from 10:30 AM ET (9:30 AM CT, 8:30 AM MT, 7:30 AM PT) to 5:30 PM ET. Everyone is welcome and encouraged to join us for this interactive, online event and we are proud to be able to offer FREE registration for all patients and parents/caregivers. 

Hi, I am Samantha and I have ulcerative colitis. I was diagnosed a little over a year ago and since then I have been trying to find a way to manage my symptoms and live a healthy life. I am looking forward to starting college where I will be studying aviation, which is a huge passion of mine.

My greatest struggle related to my UC is finding ways to not let it affect my daily life.

Nutritional Therapy for IBD - an ICN partner organization dedicated to advancing evidence-based nutrition as part of IBD treatment plans to enhance the well-being and health outcomes of all children and adults with Crohn’s disease or ulcerative colitis, recently launched an IBD Nutrition Navigator^™ 

Hello, I am Caroline! I’m 20 years old and live with a feeding tube. Since I was diagnosed with Crohn’s disease at the age of 10, my experience with feeding tubes has taken many forms. What can that look like? There are a variety of types of tubes which include nasal and surgically placed tubes, with many different reasons and uses such as nutrition, hydration, medication, or drainage. For me, the process of learning more about feeding tubes with my providers started when I was 12 years old.

ImproveCareNow (ICN) believes that when patients and parents/caregivers are true partners in the design and delivery of IBD care, we can achieve even better outcomes. One way our Learning Health Network fosters this partnership with our pediatric IBD families is through a Community Conference scholarship program. Scholarships cover the full costs for patients and parents/caregivers to attend our in-person meetings. 

Medical conferences have traditionally been designed just for medical professionals. Shifting this paradigm - offering enriching, content-focused meetings that engage and meet the needs of a diverse audience - is both a challenge and an opportunity. In ICN we are committed to continuously improving our conferences to better include all members of our community. Patients and parents/caregivers not only attend as full participants in our conferences, many of our sessions are also co-created and presented by these vital partners. 

Below are some reflections shared by patient & parent/caregiver attendees from our Fall 2024 Community Conference. If you would like to support this important work and bring more IBD family voices to our learning events, please make a donation to the Richard B. Colletti Family Fund.

At the end of 2024, we compiled all the wonderful information, knowledge, and know-how that was curated and shared by patients, caregivers, clinicians, researchers, and improvers across ImproveCareNow. 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 💚💙

This is Tori's story about her son's Very Early Onset Inflammatory Bowel Disease (VEO-IBD) diagnosis at just two years old. It's a story of misdiagnoses, frustrating dismissals, and the eventual discovery of a chronic condition that affects a growing number of very young children. More importantly, it's a story of resilience, hope, and the power of community. Enjoy Tori's powerful #IgniteTalk as she recalls the challenges and triumphs of raising a child with VEO-IBD and discovers how this journey has transformed her family and inspired them to advocate for others.

Be inspired by Tori's #IgniteTalk 🔥

Delayed diagnosis of inflammatory bowel disease (IBD) leads to prolonged symptoms and worse long-term outcomes. We sought to evaluate whether race, ethnicity, disease type, and social factors are associated with delayed diagnosis of pediatric IBD.