LOOP Blog

Hi, my name is Justin, and I was diagnosed with Crohn's disease in 2021. I am on Remicade. I am currently a rising junior in high school, and my interests are in law.

My name is Maria and I'm the ImproveCareNow Parent/Family Advisory Council (PFAC) Connections Co-Lead. Recently, I had the pleasure of collaborating with the ICN Communications team and PFAC leadership, to create the very first logo for the PFAC! Our new PFAC logo symbolizes the incredible strength and unwavering unity of parents and caregivers who nurture and support children with IBD.

Hello Everyone! My name is Palwasha and I was diagnosed with Crohn’s disease in 2020, at the age of 15. My diagnosis is one of the main reasons why I want to pursue a future in medicine as a Physician Associate, and be able to help with research and advancements for the IBD community, as there is so much room for growth.

Why was this study done?

Pediatric patients with IBD have a higher rate of psychosocial needs than young people without IBD, including anxiety, low mood, fatigue, and body image complexities. Multidisciplinary care, including psychosocial providers (psychologists, social workers), is considered the standard of care in pediatric IBD. However, there is limited research exploring how medical providers (e.g., physicians) think about and engage with psychosocial providers in pediatric IBD.

My name is Missy Ketchum, and I am the incoming Chair of the Board of Directors of ImproveCareNow (ICN). I have served on the Board for five years, an experience that has deepened my admiration for ICN’s mission. I begin my new role as Chair on July 1, 2023.

Why was this study done?

Depression is the number one health problem in adolescents, and by age 18, 20% of adolescents will experience a major depressive episode. For kids and teens with inflammatory bowel disease, the risk for depression is high. One in three adolescents struggle with some form of depression. Depression is linked to (associated with) difficulty adhering to medication, worsened disease activity, and higher healthcare costs. Yet, little is known about depression screening practices in pediatric IBD care. An improved understanding of current screening practices is an important step toward promoting mental health in pediatrics.

Diagnosed at age 15 with severe IBD, my daughter’s journey with illness was bumpy, but manageable, until the summer after her sophomore year of college. Her colonic health had been on a slow decline for some months, and that’s when cDiff took advantage. Though her health worsened over the summer, she was able to convince her doctor to let her go back to college in the fall. There, cDiff continued to recur and stopped responding to all medications. An oral fecal microbiota transplant finally shut down the cDiff but sent her into her worst flare ever. She was hospitalized on the opposite coast from where we live. I flew out to be with her, thinking it would be for a few days and ended up staying a couple of months until she was stable enough to get her home to California, where she was admitted to a hospital there. Of all the challenges we’ve faced over the course of her illness (she’s now 27), the time we spent on the East Coast, far from all our supports was the most difficult. She was on an adult ward there, and they didn’t seem to understand why I insisted on staying with her.

It was the first time my stoic child became depressed. And I found myself overwhelmed, afraid, and alone.

I remember feeling so alone in my illness. I was diagnosed with at age six and I grew up alone with this disease I was told I had and would never go away. I was surrounded by so many people but felt so peculiar because I was the only one with this disease. I always wondered to myself, “why doesn’t anyone else have this thing called Crohn’s disease?” and “why am I the only one with it?”

Ignite Talks are a true highlight of ImproveCareNow Community Conferences - whether we are meeting in-person or live online. This spring, at our Live Online Community Conference, we were honored to listen as Jane Weyer shared her personal story as parent to a child diagnosed not only with Crohn's disease, but also Primary Sclerosing Cholangitis (PSC) - an autoimmune liver condition affecting around 30,000 people in the US. Jane, and her daughter Nicole, didn't have the information or resources they wanted at the beginning of their PSC journey. So, they rolled up their sleeves, leaned on the strong foundation of connection and improvement built by the ImproveCareNow Learning Health Network, and together with other visionaries founded A-LiNK (the Autoimmune Liver Disease Network for Kids). A-LiNK Connections, the caregiver/patient community, was established to collaborate, advocate, support, and educate families on this journey with them.

Be inspired by Jane's #IgniteTalk 🔥