LOOP

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.

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.

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.

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:

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.

"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.

I’m a therapist and the lead suspect of a murder. Well, I play a character that is!

I’ve always loved theater. I’ve done 12 performances, am on my school’s improv team, and have taken drama in high school every semester. One of my favorite things about theater is that you can act as anyone. It makes me feel better to play characters who have more problems than I do, and that’s saying something. Which is one reason why I’m so excited to perform my soap opera!

As I look ahead to my graduation from high school, I want to reflect on my IBD journey. Join me for a trip down memory lane. In 2008, I was diagnosed with Crohn's disease. Since then I have tried several different medications and treatments; I have been in and out of more doctors’ offices, hospitals rooms, and clinics than I care to count. At one point, I began to believe that Remission would never come for me. My future, free from illness, seemed so far away and unachievable; I felt hopeless.

My name is Zehra and I am 20 years old. I began experiencing symptoms that were probably resulting from IBD as early as five years old. I was not officially diagnosed until I was 14. After multiple severe relapses, consisting of profuse blood loss and dramatic weight reduction, my colonoscopy/endoscopy revealed I have Crohn’s disease. Unfortunately, my diagnosis happened at a time of severe disease relapse, which impeded my education significantly. I took several years off during high school to cope with my disease and multiple life challenges, which merited the need for self-care. During this time away from school, I explored my passions further to give me a sense of purpose, productivity, and victory over IBD. After so much struggle, I am finally in my last year of high school, and I'll be graduating in June if all goes well!

https://flic.kr/ps/3hiKuq

On January 24, the PAC hosted our first ever Twitter chat. We invited the whole ImproveCareNow community, as well as our Social Media followers to join us for an hour so we could chat about Surgery & IBD. In case you missed it, here are some event highlights.