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Spring 2018 Community Conference – Building myICNhome Together

ImproveCareNow Community Conferences happen twice a year. While our community works together across the miles throughout the year, these in-person conferences provide an opportunity to work on developing and spreading QI and research skills and approaches; fueling our Network's use of data to drive and evaluate QI efforts; and developing partnerships that will lead to improved care processes and outcomes in pediatric IBD.

April 26-28 we will welcome patients, parents, clinicians, researchers, improvers, collaborators, and friends to the Spring 2018 Community Conference in Dallas, Texas and we hope you’ll join us too.

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Rethinking education for recently diagnosed, paediatric IBD patients

A while ago I wrote an article where I explained who I am, how I was diagnosed with Crohn’s disease, how I got to know ImproveCareNow and the plans of my master thesis. In early January I officially started my master thesis at the Umeå Institute of Design and in the last two and a half months I have gotten the opportunity to connect with experts and patients all across the world. I have organised a workshop at Shire’s office in Zug, Switzerland, where we tried to identify areas where a paediatric patients, caretakers or caregivers can be supported along their experience with IBD. A week later I attended the annual European Crohn’s and Colitis Organisation’s Congress in Vienna, Austria where I had the opportunity to meet Dr. Richard Colletti (President & Executive Network Director of ImproveCareNow) in person, along with other leading experts in the field of paediatric IBD.

In this post I would like to reveal two ideas I have developed here at the Umeå Institute of Design and ask for your thoughtful feedback to improve them. These ideas are concepts for products, which are not yet fully developed or widely available. 

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A Guide to Gutsy Living

One of the greatest gifts I have ever received is a small pin that’s likely worth about $5. I imagine that most people who look at the pin, proudly affixed to the collar of the lab coat I wear during clinical placements, assume it’s a red flower. But it’s not a pin of a red flower. It’s a pin of a stoma.

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Making time for everything else.

What do you fit into your average day? Meals, school, sports, work, music, time with friends, gaming, talking on your phone? Have I left out 5 or 20 other things on your list? If you’re like many teens I have met, the idea of adding even one more thing to an already jam-packed day isn’t necessarily a happy thought. In fact, you’re probably hoping for a few less things to do, and maybe simply looking forward to getting some extra sleep this coming weekend!

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Slow Down & Smell the Roses

When parents watch their first child head off to their first job - out of state - understandably there will be hugs, tears, and teachable moments. The night before I left home and traveled 477 miles away to start a job in Atlanta was Christmas. As my girlfriend, Emma, and I were saying goodbye to each other - there were definitely tears. And it was during this emotional moment that my Dad came over and wrapped both of us up in a hug and said, “it’s not going to be easy, but it’ll be okay.” Just another of life’s hard moments, made a little better with the sharing of a little parental wisdom.

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Tools for Life With IBD - Updates

In ImproveCareNow we believe in "sharing seamlessly and stealing shamelessly," which essentially means if someone has an idea and develops something useful, it is shared widely so others across the network can benefit from their work. Our culture of generosity and sharing allows us to spread new ideas and innovations quickly, so they can impact many more lives.

We maintain a selection of tools & resources on our website, which can be accessed at any time. Here are a few highlights and recent updates.

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Moving Mountains

Prior to this year, I really didn’t understand what Crohn’s disease or IBD was. For about a month, I had been telling friends and family that my daughter was having stomach issues, and they would usually reply: “oh it’s probably just a virus; I’m sure it’s nothing serious.” Then on January 16, everything changed. My daughter, who is 13 and in 8th grade, was diagnosed with Crohn’s disease.

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Parent and Caregiver Self-Care Tips

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I am a parent of three children, and all three have Crohn’s disease. My oldest was diagnosed in 2010 and my younger two were both diagnosed at the same time, in 2013. As a parent of one child, let alone three children with IBD, I found life overwhelming, stressful, and mentally and physically draining. Personally, I have found self-care to be a critical piece in coping with the initial diagnosis and the on-going treatment and care of my children. I will be the first to admit I struggle with self-care at times, but at least I have a list:

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A blessing in disguise

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Hi there! My name is Bianca. I’m and 18-year-old college student who loves Broadway and being a patient advocate with the PAC, my Crohn's & Colitis Foundation chapter, and the National Council of Crohn’s and Colitis Leaders. I was diagnosed at 15 with ulcerative colitis and since then have absolutely fallen in love with spreading awareness about Crohn’s disease and ulcerative colitis and fostering compassion around these chronic illnesses.

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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.

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