LOOP Blog

“Congratulations! YOU have been selected to participate in the Exclusive Enteral Nutrition (EEN) Challenge!”…

…raved the email sent to me by our GI dietician Lacy and our GI nurse, Malerie. Feeling as if I’d been invited into a secret society, I read on. Inspired by other pediatric IBD groups with well-organized enteral nutrition therapy programs for pediatric inflammatory bowel disease (IBD), Lacy and Malerie were challenging our GI division at C.S. Mott Children’s Hospital to experience what it would be like to exist on an all-formula diet in the great state of Michigan, where a good percentage of social activities revolve around cheese and/ or fried food (not uncommonly, fried cheese).

Welcome! – the Patient Advisory Council has been using that word a lot so far in 2016.

The PAC is growing quickly, illustrating the enthusiasm for the council. We’re proud to welcome four new members (with 3 joining in one week)! I’ve had the opportunity to get to know them and it’s my pleasure to introduce them to you here on LOOP.

Before we meet our new members let me just say a word or two about myself – in case we haven’t met yet. My name is Tyler Moon and I am the Recruitment Lead for the PAC. I’m a 19-year-old sophomore studying finance at Saint Louis University. I have Crohn’s disease and have since I was 9 years old. I’ve been a member of the PAC since its early days and am grateful to have experienced its growth and evolution firsthand. I’m passionate about making a difference in the IBD community as we make our way closer to a cure, and I won’t quit until one is found. In my (rare) free time, I enjoy Netflix binges, hanging out with friends, working out, snowboarding, and a newfound hobby – skydiving.

Now, without further ado, let’s say hello to our newest PACers!

The Patient Advisory Council (PAC) is so simple, yet so complex. It’s simple in the sense that each member is a young patient with IBD and together we are working within the community to improve care and make a difference. It’s complex in the sense that each PAC member brings their own unique experiences, knowledge and know-how and applies these in different ways to accomplish our goals. And there is even another layer of complexity when you consider the battles my fellow PAC members face daily from IBD. The PAC is diverse and each person’s unique contribution is crucial to the achievement of our goals; many of us have written or talked about what we do for the PAC, but what about the reverse?

We are writing this at the end of another whirlwind year in ImproveCareNow. Just looking at the basic facts and figures, 2015 was much like every year since 2007—successful, busy, and vibrant:

• We continued to improve, with a continued steady increase in our Network-wide remission rate culminating in reaching 80% as of November 2015.
• We continued to grow, welcoming 14 new care centers during the year. We now include a total of 85 centers across the US and UK.
• We impacted the lives of more patients, with 24,000 children and youth with IBD cared for at ImproveCareNow centers. These children are benefiting from our focus on continuous improvement work and evolving pediatric IBD research portfolio.
• We stayed connected and communicated openly, on 10 Network-wide webinars, during 30+ Learning Lab webinars, within nearly 10 focused role-specific groups, and by way of our “virtual commons”. The ICN Exchange had 600+ users “sharing seamlessly and stealing shamelessly” in 2015.
• We continued to test new approaches to improving care and health of all children and youth with IBD, by launching a number (too many to count!) of new initiatives and collaborations, including the COMBINE study, the ImproveCareNow engagement and leadership campaign, and collaborations with CCFA and other external partners.

We’ve had a dynamic year, filled with changes! Looking back on all that we have accomplished, we can’t help but be excited for the upcoming year, the exciting things we have planned, and the goals we plan to achieve. The PAC will be saying so-long to 2015 and ringing in the New Year with a redesigned council structure, new task force leaders, and new co-chairs.

As 2015 ends I can say the year was nothing short of remarkable. The Parent Working Group (PWG) grew, accomplished and got stronger. The fall Community Conference was a high point for parent participation. My first conference was in October 2012 where 18 parents attended. This year our numbers swelled to nearly 50. Participation on our monthly calls has increased 50% in six months. This growth speaks directly to the partnership between the ImproveCareNow Network and parents.

What is the Patient Advisory Council (PAC)? You may already know, but the PAC is a group of young patients with Crohn’s disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease, or IBD) from across the country who are passionate about being IBD advocates and taking an active role in making care better for all children and youth with IBD. As a member of the PAC I get to work alongside many patients who are nothing short of incredible, inspiring people. We all have different stories of IBD battles and we all lead very different lives but we share two traits – we have IBD and we have a passion for making a difference. Our differences, combined with our passion, make us a powerfully unique group.

10 years ago this past summer, I was a shy, rather-little boy sitting in a post-op room in the hospital hearing the words, “You have Crohn’s disease.” I had no idea what Crohn’s was at that time, why I had it, or what it meant for my future. I won’t go into my diagnosis and battle story, which we hear versions of so often. Instead, I want to focus on what this disease has done to my life that I’m grateful for. For the first four years after my diagnosis, I didn’t want anyone to know outside my family. I was embarrassed and just wanted to be “normal”, but who could blame me? I still have yet to really figure out what would be considered “normal”, so if anyone knows please let me in on the secret.

After those four long years of suffering in silence, I realized I could continue sitting around waiting for change to come and for things to get better, or I could get involved and help change things for the better myself. 

Much about Thanksgiving is the same year to year. People come together with friends and family and community, often enjoying a large meal together, and spending the day doing something meaningful—whether doing community service; watching football; or sitting around talking, telling stories, and recovering from the large meal. But while many things about this day of togetherness and gratitude remain constant each year, our personal roles may shift. Sometimes we host the meal at our home. We are the “leaders” for the day, developing the menu, doing most of the cooking, deciding when the group will eat, assigning tasks in the kitchen, and choosing which football game will be on. Other times, we are a guest in someone’s home, often traveling some distance, we are told which side dish to bring, when to arrive, and which activities are planned for the day. Sometimes we are grateful to play a supporting role in the production, and other times it can be hard to sit back and watch events unfold differently than they would if we were in charge. Maybe the mashed potatoes don’t taste just like our Thanksgiving memories, maybe our family always took a walk after eating and we’re antsy to do the same, and maybe the wrong football game is on TV (or we just can’t stand watching football at all).  Or maybe it’s just perfect—just the break we needed from running the show – and we bask in the glow of learning new ways of doing things and watching others shine.

Project WOW (Wear an Ostomy for the Weekend) was created to help the ImproveCareNow Community learn more about what patients wearing ostomies go through on a daily basis. The Parent Working Group (PWG) and Patient Advisory Council (PAC) wanted to create a learning opportunity where we could work together. We knew this project would only give a snapshot of what patients go through because participants wouldn't have had surgery and the ostomy wouldn't be functional. But we still believed it would be powerful because participants would be learning from perspective, spending some time "walking in patients' shoes", which is something often times difficult to accomplish and not easily seen.