LOOP Blog

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.

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!

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). 

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.

Christian Lawson is a former co-chair of the Patient Advisory Council (PAC) and a current improver and member of the ICN Health Equity 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.

The PAC released episode 1 of our imPACt podcast on February 28, 2021. Join Vanessa and Fionna as they celebrate one year of imPACt and chat about some of their favorite parts of podcasting, share which episodes they like the most, and talk about where the podcast may be headed in the future.

Lifestyle and IBD is a new web-based toolkit that the Patient Advisory Council (PAC) began working on in early 2020. As COVID-19 impacted the lives of many across the country and the world, discussions about how IBD impacts how patients live became especially important to members of the PAC and the greater IBD community. Seeing a need, we decided to co-produce a resource - for patients, by patients - that could help others by sharing direct patient experiences, patient-developed information, resource links, and professional information and insights.

In February 2020, just two months after I said Happy Trails to my ICN family, I got a call that my brother was being admitted to the hospital. He had experienced a 30lb weight loss in just two weeks, and reported up to 15 bloody stools per day, fevers, and fatigue. When he told me they suspected he had IBD my jaw about hit the floor. I knew thousands of people with IBD through my years working with ImproveCareNow and their pediatric IBD registry. But until February 2020, IBD had never touched someone I love.

Join Fionna, Shira and Caitlyn as we talk with special podcast guests - Dr. Hilary Michel and Dr. Ashish Patel - about patient-centered care from both the provider and patient perspectives. 

"Knowing what a patient's goals are, what their values are, what's important to them and trying to shape how we take care of that person with those things in mind." - Dr. Michel

"All coming to an agreement on how we want to move forward in that patient and family's care." - Dr. Patel

"It's important that we also know that as owners of our bodies we are also the experts, and I think patient-centered care does a really important job of integrating that." - Shira