ImproveCareNow Patients
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.
Episode 23 of the imPACt podcast - Happy One Year!
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 - A New Web-Based Toolkit for Patients by Patients
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.
Episode 22 of the imPACt Podcast - Patient-Centered Care
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
A Thank You Letter
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.
Episode 21 of the imPACt Podcast - J-Pouches
Hi all, it's Hannah. I've written about ostomies and j-pouches here on LOOP before. Last June, I shared What I Wish I Knew About J-Pouch/Ostomy Takedown Surgery and it ended up being the second most-read post of 2021. So, this topic is pretty important to our community. And that's why we decided to make a podcast episode about it.
I never liked avocados until after my UC diagnosis
I never liked them, but when my doctor told me avocados are filled with good fats and that they are a wholesome food loaded with nutrients, I decided to give them a chance. I was surprised by how good they tasted!
Episode 20 of the imPACt Podcast - PAC Toolkits Recap
One of the opportunities that active PAC members have is to work on the creation of PAC toolkits. These resources cover many different topics related to life with IBD, but they all share one important thing in common - they are for patients, by patients.