LOOP Blog

Last year I joined the board of ImproveCareNow (“ICN”). ICN is a collaborative health care network dedicated to improving the care and outcomes for children with Crohn’s disease and ulcerative colitis (also called Inflammatory Bowel Disease or IBD). What excites me about ICN is that it has developed a transformative model for the delivery of health care unlike anything I have ever read about or experienced myself.

Traveling with IBD, whether it be inside or outside the country, isn’t always easy. However, the PAC has created a new tool to answer questions, share experiences, and hopefully help ease some of the stress of traveling with IBD! Initially, we planned to offer information for patients wanting to study abroad. After giving this idea some more thought, PAC members decided a toolkit with general information about traveling is more relatable and would help more people. Thus, the Travel Toolkit was born!

I always get nervous before group meetings. I worry that no one will show up or that the material won’t be helpful. Last Wednesday was no exception. When I walked into a conference room at Cincinnati Children’s Hospital I was nervous but shouldn’t have been. I was greeted by smiles, waves, and pizza.

I felt comfortable, accepted, and ready to learn.

My name is McKenna, I’m 18 years old and just graduated high school! I was diagnosed the fall of my sophomore year with Crohn’s disease. That year I quit playing soccer and joined the boys varsity football team for junior and senior year!  

My biggest struggle with Crohn’s was myself…I became my own worst enemy.

Growing up is hard. School is hard. Managing friendships and reaching goals is hard. And, living with IBD is hard. There is no question that kids and teens today have a mountain of responsibilities and pressures without worrying about managing a life-long condition. With all the school assignments, sports, activities and just trying to have fun, having to add in one more thing might make it feel like the glass is going to shatter.

When I joined ImproveCareNow about 1.5 years ago, research was one of the primary ways I wanted to be involved. I’ve lived with Crohn’s disease for almost 11 years, and for much of that time research felt like something that happened behind the scenes and was entirely out of my realm of influence. Often research is done to or about patients and families, but very rarely is it done with them. Engaging patients and families in research can not only enhance the research itself, but it can also help patients and families feel as though they have a stake in the discovery of new knowledge about IBD.

I have been part of the PAC since August 2016. Getting started, I never knew that joining the PAC would be so life-changing for me. I never dreamed of being a part of something as innovative as I believe ImproveCareNow is. From my perspective, no other healthcare network has accomplished so much as ImproveCareNow. As a patient, it allows me to boast on those accomplishments, and it motivates me to work harder in doing my part to grow the network. Wait, but what is my role? The patient’s role?

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 June 13 between 4:30 and 8pm ET for our Spring 2018 Virtual Community Conference. Read more to see the agenda for this event. 

Recently, we completed Social Media Week leading up to the Spring 2018 ImproveCareNow Community Conference. PAC Social Media Week is a time before a Community Conference, when we like to engage ICN members and the IBD Community and generate enthusiasm by sharing a personal and highly-focused series of quotes, pictures and stories. In the past, we’ve addressed questions like "What is your IBD story?" "What or who motivates you to keep on fighting?" and "How do you/or the PAC raise awareness for IBD?" This year we focused on the core values of ImproveCareNow. With the help of PAC members, we were able to compose a post for each day, sharing a core value and what it means to them.

Here are some #ICNCC18S PAC Social Media Week highlights:

My son was diagnosed with ulcerative colitis in 2014, at the age of 13. Fast forward to 2018, and I am thrilled that he is in remission and a thriving 11th grader juggling AP classes, SATs, extra-curricular activities, college tours, and yes, medication adherence. However, I’m also here to tell you, it has been a journey to achieve and sustain remission. Like so many of you, my mind raced with a litany of questions for days, weeks, and months after his diagnosis…IBD? Ulcerative colitis? What? No cure? How did my son get this? Next, guilt set in and then more questions…Why had I not heard about IBD before his diagnosis? Is this genetic? Was it the foods I prepared? Could I have prevented it? I was so distraught. I could not fix this, not this time.