ImproveCareNow Pac


Ulcerative colitis and my relationship with food

My name is Leela, I’m in high school. My diagnosis with ulcerative colitis was a little chaotic. I didn't tell anyone that I was bleeding for about six months, so by the time the issue was brought up, I was severely anemic. I was officially diagnosed with UC the fall of my sophomore year (a little over a year ago). After having no success with medications, I went through surgery for an ostomy April 8, 2019, with the plan of ultimately getting a j-pouch. I lived with an ostomy bag for seven months, and have since undergone two more surgeries, my final one in November 2019, to have my ostomy reversed.


Coronavirus Perspectives: Art & music are how I’m coping

We believe everyone’s story matters and is important and can change someone else’s story. In the midst of the current global coronavirus pandemic it feels more important than ever to share our stories, experiences, knowledge and know-how widely, to stay connected virtually and to continue reminding each other - we are not alone!

Thanks to PAC (Patient Advisory Council) member, Quint for sharing his perspective!


My diagnosis experience taught me it’s OK to seek help from others

My name is Jake and I’m a senior in high school. I was diagnosed with Crohn's disease in the fall of my junior year. One interesting thing about me is that one day I decided to take up running, so I signed up for the Atlanta marathon. After only a month of training I completed the marathon - this made me really fall in love with the sport!


Coronavirus Perspectives: Stay safe and reach out when you need it

We believe everyone’s story matters and is important and can change someone else’s story. In the midst of the current global coronavirus pandemic it feels more important than ever to share our stories, experiences, knowledge and know-how widely, to stay connected virtually and to continue reminding each other - we are not alone!

Thank you so much to PAC (Patient Advisory Council) member, Becky who shared her perspective on life with IBD in the time of coronavirus and the disease it causes – called COVID 19.


The PAC wants to connect with you and have some fun together

Hi, it’s Christian – co-chair of the PAC! I’m really excited to let you know that the PAC is once again offering ICN gear in our online shop. This year, we’ve added some new hoodies and sweaters in gray, black and white. And you’ll find some other fan favorites: t-shirts, coffee mugs, pillows, and more! To get your ICN gear, please visit: https://teespring.com/stores/2020-icn-store


PAC members discuss wellness, creativity, self-care and community

Wellness means different things to different people at different times. And while no single path leads us definitively toward or away from wellness, investing time in the things we love, making supportive connections with friends and family, and caring for ourselves can have an impact. PAC members – Becky, Linden and Quint – share their thoughts on wellness, creativity, self-care and community in this post.


My Biggest Struggle is Dealing with an Invisible Disease

Hello, my name is Allison. I was diagnosed with Crohn's disease at the age of seven. Currently, I’m a first-year college student. Something interesting about me is that I have two older sisters and two brothers-in-law.


Chronic illness can't be solved like an equation.

I’ve been watching a show called New Amsterdam. As a person who lives with Crohn's disease, I really appreciate the way the writers try to incorporate healthcare in such a patient-focused way. There’s a quote I really like from the show about importance of patients being the experts:

“...Leave the quantifiable behind and rely instead on experience.”


Navigating Empathy and Emotional Labor with Patient Advocates

My name is Catalina - I’m a current co-chair of the ICN Patient Advisory Council, a social/clinical research assistant at the University of North Carolina and will be starting medical school soon. I recently gave a presentation at the Anderson Center for Health Systems Excellence about emotional labor, empathy and how to navigate these concepts when working with patient advocates. I wanted to share some of my talking points with you here.


Having support keeps you grounded.

Lately, I’ve been reflecting on the importance of having a support system. Whether it be friends, family, or even strangers…in that Facebook group you joined a few weeks ago. Having support keeps you grounded, and I find it can have beneficial effects on both my mental and physical well-being.


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