LOOP

ImproveCareNow Community Conferences happen twice a year. While our community works together across the miles throughout the year, these in-person meetings provide an opportunity to work on developing and spreading QI and research skills and approaches; fueling our Network's use of data to drive and evaluate QI efforts; and developing partnerships that will lead to improved care processes and outcomes in pediatric IBD. Join us as we continue to co-develop our three pathways to work towards our common mission: to transform the health, care and costs for all children and adolescents with Inflammatory Bowel Disease.

My name is Ian and I’m a clinical research coordinator at the University of Vermont (UVM) Children’s Hospital. I work 20% of the time on ImproveCareNow (ICN), and the rest is spent supporting a variety of other pediatric clinical trials at UVM Children’s. Our pediatric GI team has been participating in ICN since 2007 and we are continuously looking for ways to improve the health and experiences of the kids we care for. Recently, with support from the ICN Engagement team, we volunteered to try and make improvements to our process for getting our patients and families aware of and taking advantage of the benefits of our ImproveCareNow participation. Last August we began testing ways to improve the very first step in this engagement process, Awareness.

Our son, Grant was an extremely active 13-year-old who played lacrosse and tennis, mountain biked and skied. It was hard to believe he had a disease when he looked and acted so healthy. What caught our attention was an abscess that would not heal. After three surgeries, a series of tests, and a colonoscopy, it was confirmed Grant did, indeed, have Crohn’s disease.

Hello! My name is Mahalakshmi (Maha for short!), and I am 18 years old. I have Crohn's disease, which was diagnosed two and a half years ago, but I've definitely had it way longer than that. I am attending college in California in the fall as a biology major and I'm excited for what the future holds! My hobbies include singing, acting, spending time with friends and family, and playing board games. One interesting thing about me is that I love languages. I've been bilingual since I was a child and started learning another language in high school that I hope to stick with in the future!

My name is Rohit and I am 20 years old. Right now, I am a rising junior majoring in Genetics with a Certificate Program in Computational Genetics at an Honors College in New Jersey. I was diagnosed with Crohn's disease in 2016. One interesting thing about me is that I'm the only one above 6 feet (actual height: 6' 2") in my entire immediate family!

Hi, my name is Rishi, and I’m a 19-year-old Medical Sciences undergrad as well as a Student Researcher at a Children’s hospital. I was diagnosed with Ulcerative Colitis in August of 2016, but most people outside of the IBD community have no idea I have IBD. In addition, many people do not know I lived in the National Radio Quiet Zone for a month last summer: no internet, no cell phone service…nothing!

My patients sometimes like to discuss the “hassles” of preparing to enter the adult world and manage their own health. I run a transition education and co-management program through my center’s IBD clinic, where I try to help parents and patients begin to shift the daily regimen of medical behaviors from parent, to parent-patient, eventually to patient management with support. Part of our time together just includes talking out loud about the best and worst of growing up and launching into the world as young adults.

The way I have felt about making time to explain (or to not explain) my IBD has changed since I was diagnosed seven years ago. Early on I felt like no one understood, and therefore I didn’t put any energy into talking about it. Unhelpful comments and ignorance were hard for me to get past. It took me a long time to realize people can’t understand what they don’t know about.

The first question new parent partners often ask is: What should I do first? One of the first projects I worked on with my team was to create “CHOC’s Guide for your IBD Road to Wellness” – a handbook for newly diagnosed families.

Dealing with IBD comes with a lot of appointments, tests, medications, and procedures. Going through all that, especially when many things happen at once, can and does take a toll on my mental health. I realized that it’s extremely important to have not just one, but a whole system of coping mechanisms to help me get through difficult situations with respect to my health.