LOOP

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!

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!

A few years ago, I was in a retail chain store and the person in front of me at the cashier asked to use the bathroom. The cashier said, "We do not have a bathroom." So, when it was my turn to cash out I said, “You have a bathroom...you just don't let the public use it?" She answered me, “Yes.” I thought to myself that this would be a great teaching moment.

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.

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.

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 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.

Oh, the dreaded d-word. Typically, I can't say I depend on US Government documents for my definitions, but I feel like this is one of those situations where I can. Per various acts, written over many, many decades, a "disability" is frequently referred to as something that is a physical and mental impairment that substantially limits one or more 'major life activities’. So, with that definition in mind, as offices on college campuses around the country change their names from "disability office" to "accessibility office," I'm left wondering what it is they're trying to achieve, and why so many people are scared of being classified as having a "disability."

My name is Chloe and I’m 18 years old. I graduated high school in June, and currently work as a cashier. I was diagnosed with UC at age 13.

The ImproveCareNow Registry is a treasure trove of information about patients living with IBD. But, data, like Amazon gift cards, are worthless unless used. And it takes some intrepid, or at least good-with-numbers, Indiana Jones-type researchers to plunge into the depths of the jumble of figures – to put the data to work to answer questions.