ImproveCareNow Talking_about_ibd


Episode 25 of the imPACt podcast - IBD, Meds, Biologics...Oh My!

Medications and biologic drugs are often a big part of managing IBD. Shira and Fionna were texting about their personal experiences with meds and biologics when they realized others in the IBD community might benefit from being able to listen in on their conversation. So, we decided to make a podcast episode about it! 


The story of "Up and Adam" - my picture book for kids with IBD

Hi, my name is Adam, and I am a 24-year-old medical student. I was diagnosed with ulcerative colitis when I was two years old and had my colon removed when I was 12. Recently, I published a children's picture book, Up and Adam, about my childhood experiences facing IBD with a positive attitude. This is the story of how and why I created Up and Adam and how I hope my book can help young kids by offering a tangible connection to someone who knows what they're going through and can remind them they are not alone. 


Episode 24 of the imPACt podcast - Drs. Sunseri & Crawford talk Exclusive Enteral Nutrition with the PAC

Hello everyone - it's Fionna from the Patient Advisory Council communications team. I'm excited to share that after a bit of a break the PAC is back with an exciting new episode of our imPACt podcast where we chat about a commonly used, but often not discussed, IBD nutritional therapy.


Crohn’s disease taught me not to be so quick to blame myself without knowing the whole story!

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!


Top 4 Things to Know When You're Diagnosed with IBD

When I was diagnosed with ulcerative colitis at 14 years old, I was shocked. I was lucky enough to already have some familiarity with the disease, but I never thought it would happen to me. I had every single textbook symptom, but I still felt so numb and so distant from the new reality I had to face. This isn’t an uncommon feeling, and it can be really hard to know where to start. IBD is a complex disease, so here are some things I found helpful while learning to navigate those first few months after my diagnosis.


I was given this life because I’m strong enough to live it!

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!


A Thank You Letter to Jill Horan

Let’s all stop to take notice of one of the truly wonderful people around us: Jill Horan. The following reflection was written by incoming parent co-leaders, Heidi and Ildiko, as a celebration of the dedication, creativity, passion and kindness that Jill has brought to her careful tending of the ImproveCareNow Parent Working Group (which has announced a new name, by the way). 


I loved having support from friends and family when I felt vulnerable and alone

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.


Sometimes we're tested not only to show our weaknesses but to discover our strengths

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.


Navigating the Chronic Disease Journey as a Young Black Patient - Christian Lawson's 2021 Stockman Lecture

Christian Lawson is a former co-chair of the Patient Advisory Council (PAC) and a current improver and member of the ICN Diversity, Equity and Inclusion Committee. Christian was nominated by fellow improver, Lisa Pitch, and was awarded the James A. Stockman Lectureship through The American Board of Pediatrics (ABP) Foundation. On October 10, 2021, Christian spoke during the American Academy of Pediatrics National Conference and Exhibition, sharing his experiences as a young Black patient navigating the chronic illness health care system.


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