ImproveCareNow Pac


PAC 2017 Year in Review

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As the Patient Advisory Council says hello to 2018, we want to take time to reflect on all we accomplished in 2017. From new members to new toolkits, retreats to a redesigned logo – we have so much to celebrate!


I May Struggle At Times

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Like most people, I’ve had my share of challenges in life. However, in March 2017 I was met with my biggest challenge to date. I started to feel sick with bad stomach pain. As time went on I noticed the pain was getting worse. I started to lose my appetite and was vomiting multiple times a day. My parents called the doctor, and they said it was probably a stomach bug. They recommended waiting two weeks to let the virus run its course.


It's Okay to be Different

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A few years ago, I gave one of my older brothers a children’s book called “It’s Okay to be Different.” The book was downright hilarious. It contained colorful pictures of people “being different” and being okay with it. Didn’t you know that “it’s okay to come in last?” Or, my favorite, “it’s okay to eat macaroni and cheese in the bathtub.” As you might guess, I gave this book to my brother to poke fun at him, not on a serious note. However, the book had a good point. IT IS okay to be different. In fact, it’s pretty flippin’ awesome.


Frequently Asked Questions About the PAC

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The Patient Advisory Council (PAC) is a group of young (14 +), passionate and motivated patients with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease, or IBD). Together, the PAC is a voice for all patients receiving care at ImproveCareNow Centers. PAC members contribute to research studies and the development of health care innovations; they share valuable experience and insights with healthcare professionals, researchers and others; and they raise awareness of IBD and ImproveCareNow. In this post, PAC members have answered questions they are frequently asked, about what the PAC is, how to connect patients with the PAC and how to support the PAC in reaching their goals. (If you’re a member of an ICN center – pay close attention to the last four questions & answers - they're directed at you!)


Crohn’s & Colitis Awareness Week 2017

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Thanks for joining us during Crohn’s & Colitis Awareness Week (December 1-7). Each year we are excited to do our part to raise awareness of Inflammatory Bowel Disease. This year, we decided to debut a collection of our Care Cards, which have hand-written messages of hope and support from members of our community to patients with IBD and their families. We invited everyone to show their love for these cards by liking and sharing them with others – to reinforce the message: You Are Not Alone!


Top Ten LOOP Posts of 2017

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LOOP is making an impression on the IBD community! In 2017 LOOP was recognized twice as a top blog for Crohn’s disease – 19 of 100 by Feedspot and Top 10 by Medical News Today! This is a direct result of the variety and quality of stories and perspectives shared by so many members of the ImproveCareNow community!

In 2017, 50 posts were published by 36 ICN community members! And 18 people posted for the very first time during the year. Posts covered topics like: IBD research, new PAC member intros, ICN event updates, what I wish you knew, and many open & honest accounts of life with IBD.

We are thankful for each and every one of these stories. Here are the top 10, most viewed, LOOP posts of 2017!


 


My journey with UC

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My name is Norma. I’m 17 and I have battled ulcerative colitis since I was 10. I was born and raised in a small town near Mexico City, but a year ago my Mom and I moved to Los Angeles, California. Currently I am a senior in high school and hopefully next year I'll be attending Harvard University (YEP, HARVARD!).

For years I spent my time looking for someone to blame, it didn't matter who. I blamed myself for not being "normal" or healthy enough. I blamed my Dad (who battles UC as well), and I blamed God. I needed a reason for why I was going through such hell; why I couldn't attend school like my friends; why I had to take so many medications; why I had to go an outrageous amount of times to the restroom. I fell into a deep depression.

The worst part is that, at the time, I didn't realize this was affecting my parents as well. They lived every single step of the way with me. I think that having IBD is awful, but having to watch your kid struggle with IBD must be even more awful.


To my 9-year-old self, thank you

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Imagine this: You’re nine years old and you’re told you have an incurable disease. How would you react?  The way I saw it, I had two options: be afraid of this disease and let it control my life, or embrace the healthy times and make the most of every day. I chose the latter and since my diagnosis I’ve tried to make the most of every day, even if that means just focusing on the smallest of victories.


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.


Traveling with IBD

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Traveling can be fun, stressful, or both. As an aviation geek, I love nothing more than to stand in the airport looking at those beautiful birds outside, to say nothing of actually getting into one and flying away. However, IBD can make the travel experience more challenging than it already is. I’ve traveled quite a bit in my time, so allow me to walk you through my process of air travel with IBD, from planning the trip to arriving at my final destination.


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