ImproveCareNow is a community restoring the wellbeing of all kids with Crohn's disease and ulcerative colitis(Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.
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.
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.
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.
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.
Hello! My name is Nour (means “light” in Arabic). I graduated from college, where I majored in Cognitive Science and minored in Communication. Since 2011, my diagnosis has changed a few times from Crohn’s disease to ulcerative colitis, and then back to Crohn’s disease. It has been quite a roller-coaster! There was nothing I wanted more than to be symptom free and respond positively to medication. It definitely required patience. To share one interesting fact about me…I have been graying since I was five years old! No, it did not all just suddenly happen in my 20’s! As for my age, I will give you a hint. I was born on the same day and year a historical event occurred in East and West Berlin.
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.
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.
Hi, my name is Jen, and my 11-year-old daughter was diagnosed with Crohn’s disease in late January 2019. Thankfully, a family friend recommended Seattle Children’s and mentioned that they have been successfully using the Specific Carbohydrate Diet (SCD) as all or part of many patients’ treatment plans. Because nutrition therapy was something we were interested in, we decided to make an appointment there right away.