ImproveCareNow Pac


This is the story of our lives as IBD patients

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Note: As a patient advocate, I wrote this article to raise awareness (not to make anyone feel badly). So please read it with an open mind and I hope you enjoy!

Living with IBD is very challenging. It’s hard work managing a chronic condition 24/7/365 – but somehow, we do it! We never give up, because we are stronger than IBD.

I believe that all my fellow IBD friends will agree with me on this list of concerns that we face:


Project WOW 2.0

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It is difficult to understand what it’s like to live with an ostomy, or counsel someone on what to expect, if you’ve never had one yourself. With this challenge in mind my son Tyler and I created Project WOW (Wear an Ostomy for the Weekend) and offered it to attendees at the Fall 2015 ImproveCareNow Community Conference, with the goal of helping people gain some perspective by “walking in patients’ shoes” for the weekend. Recently, at the Spring 2017 Community Conference, we offered Project WOW again, with a few new twists.


Crohn’s is hard to accept

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My name is Sydney, and I'm 17 years old. I go to St. Pius X Catholic High School in Atlanta, Georgia. I was diagnosed with Crohn's disease just this March. I am a triplet, with two triplet sisters, and I also have a younger brother.


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

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Almost a month ago, my life as a high school student came to an end - no more waking up at 6am everyday, no more school dances, no more crowded hallways, and no more rules that as a person with Crohn’s disease were really hard to follow. Rules like “ask before you leave to use the restroom,” “no water bottles in class,” and “no food in the classroom,” all came to an end.

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

I learned...


A Letter to My Younger Self

Dear Younger Me,

I know you're scared and this past week in the hospital has not been all that great. All the tests and doctors are so new to you. The doctors said you have Crohn’s disease. It’s going to be okay, I promise.

I wish I could tell you these next few years will be easy, but they won't. You're going to go through some pretty tough stuff that many kids your age will have a hard time relating to. Most won't even understand it and that's okay.


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.


Crohn's, I Thank You

I often ask myself if I would rather live my life with or without Crohn’s. The answer, to be honest, is still unclear to me. I obviously would absolutely love to live without the pain that comes with it, but I wouldn’t be the person I am today without it. Surprising as it sounds, I have found that Crohn’s comes with perks that no one talks about. If you Google “Crohn’s” (or any chronic illness for that matter), you’ll likely find some pretty crazy, freaky stuff out there. I think it’s rare to find any of the positives. Well, I’m here to tell you about some of what I’ve noticed in my own life - so buckle up ladies and gentlemen!!


My Story in Extremes

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Five years ago today, on February 21, 2012, I was diagnosed with IBD.

Thinking back on my five years living with IBD, I realize that there have been many ups and downs, with struggling and succeeding, falling backwards and moving forward. I was 16 years old and in perfect health, up until about two months before my diagnosis, when I started experiencing severe symptoms. It was all so sudden and impactful. I went from being perfectly healthy to being extremely sick; from having no symptoms to having every symptom on the IBD list. On the five year anniversary of my diagnosis, I thought what better way to look back and reflect than to highlight some of the extremes in my story:


Remission, I am coming for you

"Remission." – the word many living with a chronic illness hope to hear one day. Remission is such a wonderful time of less symptoms and less doctors, but as many of us know, remission doesn't always last forever.

Since being diagnosed with Crohn's disease eight years ago I have only been in remission once, for about a year and a half. It was like coming up for a breath of fresh air. I was being drowned by Crohn's. And while a year and a half totally seems like a long time, it really wasn't. In nearly the blink of an eye, I fell out of remission and began fighting the most brutal flare I have ever known.


Older, not wiser

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In 2012 I wrote It’s OK to say it sucks! I was rereading that post and thinking that even though I’m older, I’m not necessarily any wiser. Here’s what I mean.


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