I stumbled upon ImproveCareNow (ICN) by chance. A predecessor to the network, the C3N Project, had been mentioned in passing during assigned reading for one of my university courses. Naturally, as someone with ulcerative colitis (UC) I was intrigued. Though at the time I was busy with essays, a dissertation and job applications so C3N fell to the back of my mind.  

Sometimes I feel like people expect me to always act a certain way because I have Crohn’s. Maybe you’re thinking I mean people understand and expect me to always be tired or running to the bathroom. But that’s not it; it’s that I feel like they expect me to be happy, bubbly, positive – like I am when I’m advocating.

Have you ever taken one of those silly photos that attempts to distort your perception of a landmark or scene? For example, you might make it look like someone is holding the Eiffel Tower by its point or a friend is standing in the palm of your hand. Those photos are all about your point of view or your perspective. Perspective affects a lot of things. Perspective can affect your focus, opinion and even your advice. Recently, as I attend my first ICN Community Conference, the concept of perspective was with me throughout.

Last month, I had the most entertaining ileoscopy in history (which is saying a lot since I was sedated for most of it). Let me give you the background on this:

As a young woman who has had an ostomy for nearly five years, I know the struggle of not feeling completely confident and beautiful. Ostomy or not, a majority of teenagers and young adults struggle with confidence and body image. That’s why I was so excited to see Aerie, a company that has a reputation for not touching up their photos and for representing women of all shapes, sizes, and skin colors, take their #AerieREAL campaign to the next level. In their latest set of images, Aerie is representing women with various disabilities and illnesses, including a beautiful woman with an insulin pump, a stunning woman in a wheelchair, a graceful woman with Down Syndrome, and many many more wonderful ladies.

I’m Dr. Ashish Patel, Director of the Southwestern Pediatric IBD Center at Children’s Health^SM and Associate Professor of Pediatrics at UT Southwestern. As a physician, I’ve seen firsthand how important it is for patients and their families to have a positive, supportive partnership with their care providers.

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.

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.

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!)

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!