ImproveCareNow Pac


Making nutrition a tasty, accessible, and nourishing option for all families living with IBD - the story of EATS for IBD

My name is Maddie and I was diagnosed with Crohn’s Disease when I was 13 years old. I’ve been a part of the ICN network for almost 8 years, and I transitioned from my role as PAC Co-Chair a year ago. Now I have the opportunity to share my passion project with the ICN community! Introducing: EATS for IBD™


Partnering for better pediatric IBD outcomes

ImproveCareNow (ICN) believes that when patients and caregivers are true partners in the design and delivery of their IBD care, we can achieve even better outcomes. One way our learning health network fosters this commitment to partnering with our pediatric IBD families is through our Community Conference scholarship program. Scholarships allow patients and/or caregivers to attend our in-person meetings at no cost to them.


IGNITE - The impact and importance of listening

Kera has been seeking information and making tough decisions from a young age. She was just 10 years old when she, with support from her Mom and Dad, made the choice to use nutritional therapy to treat and manage Crohn's disease after surgery. Her path to emergent surgery, and ultimately her diagnosis, was long and paved with painful symptoms and emotional trauma. Some adults dismissed her pain as "normal" or even lies. In her deeply honest #ignitetalk, Kera reminded us that life is full of inflection points...the moment a stomach bug morphed into chronic pain, the moment her pain was validated and she learned she had Crohn's, the moment her care providers really listened and answered her questions, the moment she realized that succeeding at nutritional therapy helped her physical health but exacted a huge toll on her mental health, the moment it became clear her issues with body image and eating were not safe or healthy, the moment she discovered the Patient Advisory Council and people who she didn't have to 'downplay her trauma around', the moment (which came just before she took the podium at #ICNCC23F) when her PAC co-chair, Shira, told her that she is allowed to take up space.

If reading about or listening to real experiences with eating disorders and/or body dysmorphia does not serve you, please protect your own mental well-being by skipping this post and video.

Be inspired by Kera's #IgniteTalk 🔥


A Void...Filled

For so many years I remember being this young girl surrounded by so many people but feeling so alone… different than everyone else. I used to never acknowledge that I had a chronic illness unless I had to. When I would get stomach pain, have frequent need for the restroom, or was unable to do what others were doing, that’s when I felt so different…so alone. I was always the one with the (not typical) belly pain, that couldn’t eat anything, or that kept running to the restroom…always feeling singled out.


Medication Roller Coaster

I sit staring at what feels like a mountain of pills, my pillbox barely shutting. I just wish I could be a normal college kid. Taking daily medications sounds so simple and easy, but it’s often one of my biggest challenges. Trying to keep up with medications and even appointments gets very exhausting, especially since I’ve had to do these things from a very young age. I know nothing more than a life filled with pills and appointments. 


I struggle with what I eat on a daily basis

Hi, my name is Justin, and I was diagnosed with Crohn's disease in 2021. I am on Remicade. I am currently a rising junior in high school, and my interests are in law.



My IBD diagnosis is one of the main reasons I want to pursue a future in medicine

Palwasha_Quote_Card.png

Hello Everyone! My name is Palwasha and I was diagnosed with Crohn’s disease in 2020, at the age of 15. My diagnosis is one of the main reasons why I want to pursue a future in medicine as a Physician Associate, and be able to help with research and advancements for the IBD community, as there is so much room for growth.


You have just met someone who also has IBD - you are not alone.

I remember feeling so alone in my illness. I was diagnosed with at age six and I grew up alone with this disease I was told I had and would never go away. I was surrounded by so many people but felt so peculiar because I was the only one with this disease. I always wondered to myself, “why doesn’t anyone else have this thing called Crohn’s disease?” and “why am I the only one with it?


My new irritable friend

In November of 2021, I was diagnosed with IBS or irritable bowel syndrome. I had an uninvited, new irritable friend that became a part of my daily life, just like my IBD. Leading up to being diagnosed, I had been experiencing gut-wrenching belly pain, nausea with pain, and fluctuations between painful constipation and uncontrollable and very urgent soft stools. I knew something wasn’t right. I had experienced fluctuations of stool type from my IBD, but this time it was different. 


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