LOOP Blog

The ImproveCareNow Registry is a treasure trove of information about patients living with IBD. But, data, like Amazon gift cards, are worthless unless used. And it takes some intrepid, or at least good-with-numbers, Indiana Jones-type researchers to plunge into the depths of the jumble of figures – to put the data to work to answer questions.

My name is Lexa, and I'm 17 years old. I'm currently in high school and I love to travel. I was diagnosed with Ulcerative Colitis (pancolitis) in April this past year.

My name is Mia and I’m 14. I was just diagnosed with ulcerative colitis right as my first year of high school began. One interesting fact that most people don’t know about me is that I love simply spending a day in the city!

Watching my mother in tears through the glass window panel, I felt pain. Feeling the wires stuck to my chest, I felt cold. Hearing the heart rate monitor race rapidly, I felt scared. Listening to the anesthesiologist who told me to close my eyes, I felt my worries drift away. I awoke in confusion as I was rolled back to the children’s ward of the hospital in a stretcher. The white walls, patients, and doctors blurred into one as I tried to fight off sleep, but it easily won. After hours of sleeping, I awoke to the sound of the doctor’s knocking. He took a seat at the end of my bed and stared into my eyes with a mixture of compassion and sadness. I anxiously waited for him to speak the words that would change my life forever.

Last Wednesday, I sat down armed with coffee and snacks and dialed in to the 2^nd ever ImproveCareNow Virtual Community Conference—a web-based, narrated “tour” of the ImproveCareNow community. I knew I was settling in for a long time at my desk (it was, after all, a four-hour webinar), but I was excited to be able to host the event. And truly, the lion’s share of the work—people teaching and learning together—was led by a wonderful group of ImproveCareNow Community members including clinicians, patients, parents & researchers. How amazing that sitting at my desk in Wisconsin, I was able to listen to specific stories about how care is being improved TODAY for kids with IBD in North Carolina, Virginia, Ohio, Indiana, and well beyond.

I read online somewhere that the best way to describe Crohn’s disease is that it feels like slashing open your intestines with a chainsaw. I can really relate to that post. You see, I’ve had refractory Crohn’s for eight years, which means my disease doesn’t respond to anti-TNF medications, and that significantly limits my treatment options. And that leads me to my most recent Crohn’s adventure. It all started on a Thursday in late February. After trying and failing Entyvio, my doctor was running out of ideas. He recommended I go to another IBD clinic with more experience treating complex cases like mine - to see if they had any ideas about what I could try next.

Twice-yearly ImproveCareNow Virtual Community Conferences seek to connect and grow our widely distributed and diverse community in pursuit of our purpose to improve health and care for all children and youth with Crohn’s disease and ulcerative colitis. We invite all people wishing to learn more about and get involved with ImproveCareNow to join us on October 11 between 4 and 8pm ET for our Fall 2017 Virtual Community Conference. Read more to see the agenda for this event. 

RSVP now and join our Fall 2017 Virtual Community Conference

Hi, I’m Luke. I'm 16 years old and attend Providence Day in Charlotte, NC. I have ulcerative colitis. This year, I’m looking forward to traveling to China to play basketball with my school team. Dealing with chronic illness has presented me with two main obstacles: managing stress and being aware of what my body needs (like how much sleep I’m getting and how much I can eat).

Hi, my name is Natalie and I’m a high school sophomore from Columbia, MD. I was diagnosed with Crohn’s disease at 10 years old. I’m passionate about music – I play the trumpet in my school’s marching band, as well as the piano and ukulele.

ImproveCareNow Community Conferences happen twice a year. While our community works together across the miles throughout the year, these in-person conferences provide an opportunity to work on developing and spreading quality improvement (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.

September 7-9 we will welcome more than 300 patients, parents, clinicians, researchers, improvers, collaborators, and friends to the Fall 2017 Community Conference in Chicago, Illinois and we hope you’ll join us too.