LOOP Blog

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.

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!

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 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.