LOOP Blog

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.

I was a reluctant participant - I was perfectly content to let others lead the way. It wasn’t that I didn’t care, I just didn’t think I had anything of significant value that I could share. That’s not false modesty, I was literally fumbling through trying to understand what it meant to have two kids with a chronic disease that had no cure. That was until I began to partner with my local IBD care center and the larger ImproveCareNow community. 

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 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!

In December 2021, our team's ICN Coordinator/Data Analyst - Ashley Kiel - shared her experience as an essential, but non-clinical team member involved in the challenge we undertook to educate our local IBD community about the ImproveCareNow CIRCLE and how patient and family engagement can positively impact overall care and treatment of IBD. Now, I'd like to add my perspective, as a pediatric GI doc, on why engaging with patients and families is so important, how we have been pursuing engagement efforts over the past year, and what others can steal shamelessly from our experience.

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. 

❓ What is the best way someone can support you and make you feel cared for ❓

Twenty-twenty-one brought challenges! Looking back on this year, we find there is a lot to be grateful for - not the least of which is this amazing community of improvers working together to improve the lives of thousands of young people living with IBD and their families. We'd like to express our gratitude.