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Top Ten LOOP Posts of 2018

LOOP is making an impression on the IBD community!

We enter December 2018 with 60 new posts, shared by 40 ImproveCareNow community members! And 27 people posted for the very first time in 2018. Posts covered topics like: IBD research, mental health, new PAC member intros, ICN event updates, what I wish you knew, and many honest accounts of life with IBD.

We are thankful for each and every one of these stories. Here are the top 10, most viewed, posts of 2018!


Being an advocate when I don’t feel like one

Sometimes I feel like people expect me to always act a certain way because I have Crohn’s. Maybe you’re thinking I mean people understand and expect me to always be tired or running to the bathroom. But that’s not it; it’s that I feel like they expect me to be happy, bubbly, positive – like I am when I’m advocating.


PAC Social Media Week Recap - CC18F

ICYMI – PAC hosted another Social Media Week leading up to the Fall 2018 ImproveCareNow Community Conference. Social Media Week is one way we get excited for the Community Conference! It consists of PAC members putting together a series of personal and highly-focused quotes, pictures and stories, which we share widely to raise awareness of ImproveCareNow and IBD. In the past, we’ve answered 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?" and in the Spring members shared what the ICN Core Values meant to them. For the Fall CC we wanted to share stories and examples of how we are Better Together.

These are our stories:


Triumph Cords

Hi everyone, my name is Natalie and I just graduated from the University of Cincinnati (UC) this August with a degree in Environmental Studies and minors in Psychology and Biology. On my own time I am a health & environmental advocate and enjoy fighting for awareness & understanding of things people may not be educated on (like Crohn’s disease, which I also have).

Thanks to the UC journalism department, I was prompted to write a short piece for a video and article I was featured in for my school. It was about overcoming adversity and making it to graduation, and I wanted to share it with you.


PAC Social Media Week Recap - CC18S

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:


Today, I got up.

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"A journey of a thousand miles, begins with a single step.” – Lao Tzu

Tough things are a part my routine (ahem, thank you Crohn’s). As I write, I’m waiting in yet another doctor’s office, which feels like a part-time job of mine. While I wait, I'm reflecting on the sheer amount of effort it can take to accomplish a thing as simple as getting out of bed.


My Monthly Infusion Routine

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An infusion during Thanksgiving week?

Yeah, I’ve had to get infusions on or close to Halloween, Cinco de Mayo, New Years, my birthday and other holidays too. Turns out my health doesn’t really consider fun, festive or eventful times in life as suitable excuses to delay my infusions. So, I’ve learned to roll with it, scheduling infusions that I know will wipe me out for a couple of days every month for almost six years now. I’ve had a lot of infusions in my life, so it’s pretty routine for me, but I wanted to write down step-by-step what my experience is like in case it’s helpful to others.


PAC Welcomes Six New Members

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Let's give a warm welcome to - and get to know - six new members of the Patient Advisory Council (PAC). Grady, Nick, Natalie, Shawntel, Emily and Laci are ready to #imPACt the lives of kids with Crohn's disease and ulcerative colitis, by raising awareness about the realities of life with Inflammatory Bowel Disease (IBD) and building connections and tools to support each other and all young patients with IBD. They're also using their voices and experiences to actively represent over 27,400 patients with IBD across the ImproveCareNow Network and are committed to collaborating and continuously improving outcomes as part of our Learning Health System. Let's meet them.


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