ImproveCareNow Ibd


Packing for College or Moving Out: Some Extra Items for the U-Haul

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.


My own art of talking about IBD

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.


What should I do first?

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.


Athletes and IBD

Despite being diagnosed with ulcerative colitis (UC) in 2016, it never occurred to me that I wouldn’t still be playing competitive basketball. In 2017 and 2018, my high school team traveled nationally and internationally to play, and it was an unforgettable experience. Basketball is a part of who I am. For someone who is just learning how to best manage IBD - I wanted to share my learning tools and hindsight as a competitive athlete. Do not give up who you are because of IBD - you will need to adjust and pay attention to your body, but you can continue to compete. There will be good days and bad days and that holds true for anything and everyone.


It was a journey of the senses...

My name is Heidi. I’m thrilled to share a bit of our journey…

When my husband & I traveled to India to adopt our kids, 15 plus years ago, it was a journey of senses: taste, smell, touch, sound, and sight. I have learned that parenting a child with a chronic illness is also a journey of the senses. When our 19-year-old son, Stephen, was diagnosed with ulcerative colitis the summer before his junior year of high school, we had no way of knowing where that journey would take us.


I value my quality of life over my fear of an imperfect body

Hi! My name is Becca, and I’m a junior in the School of Nursing at UNC Chapel Hill. I was diagnosed with ulcerative colitis at age fifteen, and my life has been tremendously impacted by it. I hope to use all that I have learned from my own journey to change the lives of pediatric patients in my dream job as a nurse in an IBD center.


My name is Quint

My name is Quint. I am 20 years old and attend college in Massachusetts. I was diagnosed with Crohn’s disease when I was 17, but had symptoms the year leading up to my diagnosis. A fun fact about me is that I love driving. In fact, I drove with my dad around the U.S. the summer before my first year of college. The trip was about 9000 miles and took three weeks. 


Stanford's IBD Cooking Night

My name is Mary and I’m head of the Stanford Children’s Hospital Parent Working Group. In 2017 my team and I received an ImproveCareNow Patient and Parent Innovation Fund award to host a fun and interactive cooking class to teach members of our center how to cook healthy meals for people with IBD. Through this project, we hoped to build self-management skills and help strengthen our center’s sense of community.


Knowledge is Power – Our IBD GROW event

Transition of care is a hot topic in our Pediatric Gastroenterology division. We have many patients with lifelong diagnoses, such as Inflammatory Bowel Disease, who will eventually need to move to adult care. In the past, transition and transfer of care have been a bit like an elephant in the room as patients near their 18th birthday. Questions are nervously broached by parents at the end of office visits: “How much longer will you see my son/daughter? Where do we go? What if we don’t want to see an adult doctor?” These encounters made our team realize that we needed to do a better job preparing patients and their parents for transition and transfer of care. The question was, where do we start?


Helping to make a difference in the IBD community

My name is Erin, and my daughter Caroline was only 9-years-old when she started losing weight, stopped growing and was exhausted all the time. As she grew sicker, she could not keep up with school, play with her friends, or participate in the activities she loves most: soccer and ballet. It took us almost 18 months to arrive at a diagnosis of Crohn’s disease.


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