Dating, especially in the early stages, is full of emotion…excitement and nervousness are sure to abound. However, with IBD patients, there’s a bit more hiding beneath the surface that the other person usually does not yet know about. How do you tell your significant other about IBD? How does one explain something so complicated? How do you work it into conversation? When is the right time? One of our new PAC members, Samara, recently started dating and has personal experience to share.

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’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.

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. 

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.

I am just over three months into my first year of medical school. I love it, really, I do. Every day is different and a new kind of challenge, causing me to both embrace and restrict change as I become and remember who I am.

Of course, one contributing factor to who I am is my ulcerative colitis. It rarely feels like a Disease, with a capital D. It is less of a dinosaur than a dandelion these days. Usually barely noticeable but ubiquitous in my fields of thought. But then, the slightest trigger of an associated idea or memory creates a flurry of emotion I can’t help but acknowledge.

We speed down the pavement towards Grand Canyon National Park. In a few hours this road will be jammed for miles, but right now it’s empty. The trees stand motionless in our headlights and the air rushes into the car through the open windows and back out into the night. There is a young buck on the side of the road, and his presence only accentuates the stillness of the scenery. We pass the empty ranger station, the closed visitor center, and continue driving to the rim of the canyon. Clouds cover the stars like a nightshade, and only the moon penetrates the veil—it is dark.

It’s 3:00am, and we’re at a gas station ninety miles outside of the park. We’ve been up for twenty-two hours, and been on the road for sixteen of them. I pull out of the station and on to the open road. We roll the windows down and open the sunroof. The air hits my arms and my body shivers at the cold. I stick my left hand out the window and open my palm to the night—it keeps me awake.