ImproveCareNow Story_of_self
You are not alone if you have less common IBD symptoms or locations of inflammation
Hi! I am Emma and I want to share the story of my IBD diagnosis because I think it could help others who have less common IBD symptoms and locations of inflammation. It all began when I was a senior in high school. I had this pain in my chest and upper abdomen whenever I ate or drank so I decided to go to the doctor.
Crohn’s and anxiety - it’s an endless battle.
Hi, my name is Emily and I was diagnosed with Crohn’s disease in December of 2023. Something interesting about me is that I met my idol, the voice actor of Ahsoka Tano from Star Wars, Ashley Eckstein. I joined the PAC in February 2024.
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 🔥
#InTheLOOP with our most impactful stories of 2023
LOOP is an important place for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, build confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.
We're looking 👀 back at our top stories of 2023!
IGNITE - I made a conscious choice to become a part of something
Ignite Talks have become a tradition at ImproveCareNow Community Conferences. There is always so much enthusiasm for these brief and breathtaking personal narratives. And we continue to feel gratitude and awe for the improvers who speak from their hearts and share their real life experiences with pediatric IBD. We are grateful to Tomiyo for her story about caring for her daughter with severe IBD and the emotional toll it had on her. Speaking to a live audience was an act of real bravery for this introverted parent, and it represents a promise that Tomiyo kept to herself to be involved and to help other caregivers who might be suffering like she did. Tomiyo's ignite talk highlights the importance of support, community and advocacy for IBD caregivers and the power of stories to drive us all to create a better for future for those who need it most.
Be inspired by Tomiyo's #IgniteTalk 🔥
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
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.
I am the incoming Chair of the Board of Directors of ImproveCareNow
My name is Missy Ketchum, and I am the incoming Chair of the Board of Directors of ImproveCareNow (ICN). I have served on the Board for five years, an experience that has deepened my admiration for ICN’s mission. I begin my new role as Chair on July 1, 2023.
Finding my way to mindfulness meditation practices that resonated
Diagnosed at age 15 with severe IBD, my daughter’s journey with illness was bumpy, but manageable, until the summer after her sophomore year of college. Her colonic health had been on a slow decline for some months, and that’s when cDiff took advantage. Though her health worsened over the summer, she was able to convince her doctor to let her go back to college in the fall. There, cDiff continued to recur and stopped responding to all medications. An oral fecal microbiota transplant finally shut down the cDiff but sent her into her worst flare ever. She was hospitalized on the opposite coast from where we live. I flew out to be with her, thinking it would be for a few days and ended up staying a couple of months until she was stable enough to get her home to California, where she was admitted to a hospital there. Of all the challenges we’ve faced over the course of her illness (she’s now 27), the time we spent on the East Coast, far from all our supports was the most difficult. She was on an adult ward there, and they didn’t seem to understand why I insisted on staying with her.
It was the first time my stoic child became depressed. And I found myself overwhelmed, afraid, and alone.
The impact a chronic illness has on someone's mental health is just as important as their physical health
I'm 19 years old, and I have Crohn's disease. I was diagnosed in 2012 when I was eight years old. One interesting fact is that I know how to surf even though I'm from West Virginia. I struggle the most with not letting Crohn's consume my life.