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.

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.

We've been getting to know ICN staff members through our imPACt ImproveCareNow network series (last time we talked with Chris Keck about why storytelling matters). In this episode, join Caitlyn, Vanessa and Fionna for a chat with Sydney Bogardus who supported the PAC and the PFAC (Patient/Family Advisory Council) for several years before taking on another role in ICN.

My name is Stacy and I am Co-Chair of the Children's Mercy IBD Patient Family Advisory Council (or "IBD PFAC" for short). I have twin boys and one of them is a patient of the Children's Mercy IBD Clinic. An interesting fact about me is that I am also an RN and I have worked for the Veteran's Hospital Administration for the past 17 years.

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.

So far, in 2022, 41 stories have been published by patients, caregivers, clinicians, collaborators, researchers, staff & leaders from across the ICN community sharing their unique perspectives on and experiences with IBD. Our top stories this year have covered a variety of topics, including: research on diet and fatigue, innovative IBD projects, new member introductions and top tips for newly-diagnosed patients, conversations about medical trauma, collaborating with IBD caregivers, and gratitude for leadership and learning together so we can all improve the health and care of people living with IBD.

Hi! My name is Sanjana and I was recently diagnosed with Crohn’s disease in April 2021. A fun fact about me is that I love doing art!

My name is Autumn; I am 20 years old and I am currently in college. I am from Ohio and was diagnosed with Crohn’s disease in July of 2008, when I was just six years old. I have had Crohn’s for nearly 14 years. Something most people don’t know about me is that I absolutely love to travel. Long road trips (at night is my favorite!) and going and seeing places I have never been to before is something I really love and enjoy… I see a lot of adventures in my future! A couple places I would love to visit one day would be Canada and Disney World. OH...I really want to fly on a plane!

Hey everyone, my name is Benjamin. I had symptoms for several months, but I was finally diagnosed with Crohn's when I was 11. After trying several medications and treatments, I am now on Remicade, and have been symptom free for five years. I love to play sports and hang out with my friends. One fact people may not know about me is that I was born in Switzerland.

Hi! My name is Fizza, and I am 17 years old. I was diagnosed in March 2021 with Crohn’s disease. One interesting thing people don’t know about me is that I love to do makeup. It’s like therapy to me.

LOOP is an important venue for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, grow our confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

So far, in 2021, 70 stories have been shared #InTheLOOP. Patients, clinicians, parents, dietitians, researchers, and staff & leaders from across the ICN Community have written about IBD from their unique perspectives. They have covered topics ranging from support and advocacy to the importance of sharing openly and talking about IBD, from research and innovative projects to personal struggles, triumphs and hopes for the future.

Without further ado, here are the stories you read the most in 2021!