LOOP Blog

Here #InTheLOOP we have been honored to share hundreds of stories from people across our community. We believe strongly in the power of #TalkingAboutIBD and of stories to highlight the real voices, experiences, joys, frustrations, triumphs and struggles of patients who live with IBD every single day. Today, we are very excited to be able to share a whole new way for you to engage with the patient voice - to really hear their stories - by tuning into a brand new podcast by the Patient Advisory Council (PAC) called imPACt! In this podcast PAC members will be talking openly about IBD with a goal of raising awareness and inclusivity, and connecting with listeners, each other and podcast guests.

PAC member, Andi, once wrote: “I have learned that mental health is just as important as physical health.” Talking openly about the impacts IBD can have on mental health is important to shed light on how intertwined the two really are. Here’s Quint’s experience:

We are well past the first month of the new year, which has me reflecting on some of the challenges and transitions that ImproveCareNow faced as a network and community over the past year. Twenty-twenty is like no other year that I can remember. And while it presented us with many new obstacles as we struggled together to navigate a global pandemic, it also shone a light on inherent disparities and highlighted some of the opportunities waiting to be addressed in our systems. 

Dietary interventions, nutritional drinks, tube feeding, TPN, special or therapeutic diets – there are many ways to address nutrition as part of an IBD care plan. This is Maddie’s experience:

From diagnosis, to symptoms, to treatments, to (hopefully) remission - every person living with IBD has a unique experience with it. This is Rohit's:

On New Year’s Eve, my family has a tradition of writing our New Year’s resolutions on pieces of paper and then sharing them with each other amidst chuckles and teases. However, last year, we decided to do something a little different. “Let’s not choose a resolution,” we said. “And just go with the flow.” That concept could not have been more fitting or appropriate for 2020.

My name is Madeline, and I am 18 years old. I currently attend technical community college but am transferring to a university in Virginia the fall of 2021. While in school I babysit/nanny part time. I was diagnosed with Crohn's disease earlier this year and I am excited to join the PAC. One thing most people don't know about me is that I love to sing.

Pediatric clinical trials face many barriers. They are too slow, too expensive and are often disconnected with the needs of the children and families they are supposed to help.

The Research Trailblazers – an ICN Learning Lab focused on improving pediatric clinical research – identified issues and barriers associated with participating in research studies and began to test and share strategies and best practices to close gaps related to successful trial enrollment, accelerating the pace of trial start-up, and developing more efficient processes across all phases of a research study.

A major accomplishment of this work is the information, knowledge and know-how collected in their Research Change Package - A Guide to Improving Your Research Journey.

My brother was diagnosed with ulcerative colitis when he was in high school. This was before ImproveCareNow and he had almost no access to resources or connections. He felt alone and I felt paralyzed by my inability to help him. Today, it’s my job to think about the thousands of patients and families living with IBD every day, and how to connect them with each other and the information and resources they need.

So far, in 2020, 50 stories have been shared #InTheLOOP. Thirty-four community members have written about IBD from their perspectives as patients, parents, researchers, clinicians, improvers and friends. They have covered topics ranging from COVID-19 and telehealth, to IBD research and innovation projects, to their struggles, triumphs and hopes for the future. 

LOOP continues to make an impact in the IBD community, as a place where people can share their experiences and perspectives, to help others understand the realities of life with Crohn's disease and ulcerative colitis more clearly, and to keep us all #TalkingAboutIBD. Without further ado, here are the stories you read the most in 2020!