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!

Mental health is just as important as physical health - Andrea Nowakowski

“I have learned that mental health is just as important as physical health. It plays a huge role in how well I feel on a day-to-day basis, so I try to keep an open mind and positive attitude.”

PAC welcomes new member, Andi – she reflects on the importance of addressing mental health alongside physical health when treating and managing IBD.

I became my own worst enemy - McKenna Cooper

“I denied my illness for about a year and a half. I fought constantly with my doctors and family.”

PAC welcomes new member, McKenna – she remembers how she went from alone, hurt and denying her illness, to being open about it and wanting to help others do the same.

Today, I got up - Natalie Beck

“But I have Crohn's AND things I want to accomplish; things that matter to me. It's these things, these goals and dreams and passions of mine, that help me find the strength to get up and get going.”

Natalie reflects on how IBD can make something as small as getting out of bed a real struggle, and how it’s important to be proud of what you are able to accomplish and let it be enough.

My Monthly Infusion Routine - Natalie Beck

“I’m still amazed sometimes at how adapted I’ve become to this new normal – how getting infusions every month doesn’t feel like a big deal to me anymore.”

Natalie’s had a lot of experience getting infusions, so she walks us though what a typical infusion day looks like for her.

PAC Travel Toolkit - Nicki Redmond

“The purpose of the Travel Toolkit is to share personal stories about traveling with Crohn’s disease and ulcerative colitis, answer questions, and identify tips and techniques that can make travel easier, safer and more comfortable.”

Nicki shares information about a resource PAC members created to share what they’ve experienced and learned as they’ve traveled with IBD.

A Parent’s Report from the Advances in IBD – 2016 Conference - David Wohl

"I sat among the sea of clinicians...jotting down what I found of greatest interest from the perspective of #DadofkidwithIBD."

David is the parent of a 12 year old living with Crohn's. He shared his observations from the Advances in IBD 2016 Conference, dedicated to topics in IBD research and care.

Rethinking education for recently diagnosed, paediatric IBD patients - Daan Hekking

“I have made it my goal to come up with a solution that allows patients to get the information they need in an easier and more engaging way, using improved storytelling and with a final goal of achieving a state of self-reliance prior to moving to adult care.”

Daan was inspired to apply his experiences as a Crohn’s patient to his master thesis in Advanced Product Design, and in this post, he writes about his progress toward developing a useful tool to help improve the way young patients learn about and understand their disease.

Slow Down & Smell the Roses - Alex Jofriet

“They reminded me, “Alex, you’ve only been there for a few weeks, slow down and take in the current experience. You have time.” It was just what I needed to hear.”

Alex has seen ImproveCareNow from many perspectives, and recently made the transition from patient volunteer (Co-Chair of the Patient Advisory Council) to ICN Care Center Team Member (ICN Data Coordinator in Atlanta, GA), and in this post he shares what he’s learned about life, moving forward and making big decisions.

4 Things I Learned as a High School Student with Crohn’s Disease - Bianca Siedlaczek

“Rules aside, what did high school teach me, besides how to solve overly-complicated matrices and what taxes are?”

Bianca reflected after her high school graduation on some things she’s learned as a student with Crohn's disease – her top learning was to put her health first.

A Guide to Gutsy Living - Jennie David

"Publishing is academic currency, by which ideas can spread like wildfire in a way once the information is distilled into a manuscript. It is a way to translate the passion and success of ImproveCareNow to clinicians beyond the network, to begin to share the seemingly bold idea that patients and parents are a key part of care and research.”

Jennie writes about the paper she co-authored, it's published by patients and focuses on a project brought to fruition by patients and parents. She sees it as an important step toward changing the cultural norm in medicine.

We look forward to continuing to share even more stories and perspectives in 2019!

Help us out: Share your story about real life with IBD and what you wish people knew, your experiences with treating & managing IBD, or how you're asking & answering questions about IBD through research.

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