LOOP Blog

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 April of 2008, when I was just six years old. I have had Crohn’s for 14 years this month (April 2022). 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 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.

The PAC released episode 1 of our imPACt podcast on February 28, 2021. Join me (Vanessa) and my communications co-chair, Fionna as we celebrate one year of imPACt and chat about some of our favorite parts of podcasting, share which episodes we 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 me (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

During a recent consultation with a colorectal surgeon, I found myself being heard. My feelings and my goals were shared and validated. It had been so long since I felt this way after meeting with a new provider. After the visit, I sat in my car for a moment, completely taken aback by how well the encounter had gone (especially when I have also experienced having both myself and my concerns written off without even so much as an examination). After this visit, I found myself reflecting on all the healthcare providers who have treated me over the past 13 years. And I just have to say…thank you.