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!

Information about the novel coronavirus (COVID -19) for IBD patients and families – ImproveCareNow

While ImproveCareNow is not in the business of providing direct medical advice, we are in the business of connecting people, learning together and sharing information seamlessly.”

This post includes a collection of reliable sources of information where patients with IBD and their families and caregivers can learn more about the novel coronavirus. It is updated periodically to add new information.

Staying warm and comfortable during infusions – Emily & Ella Shamash

“I decided I wanted to make a sweatshirt, for kids getting IV infusions, that is comfortable, motivational, and most of all does not look like a hospital gown or medical-wear.”

The story of how a mother-daughter team partnered with their local IBD care team to develop an IV sweatshirt with support from the ImproveCareNow Patient & Parent Innovation Fund.

Innovation Update – IV Sweatshirt prototype is comfortable and efficient – Emily & Ella Shamash

“I have been able to use the first IV sweatshirt prototype and it has proven to be a success for me during my infusions. It is comfortable and efficient, while not getting in the way of the medical process. I can’t believe my vision has become a reality and I can’t wait to be able to offer this experience to others!”

Patient & Parent Innovation Fund award recipients, Emily & Ella, share an update on their highly anticipated IV sweatshirt project.

ICN Research Explained: Population Management: A Tool to Improve Timely Care in Pediatric and Young Adult Patients with Inflammatory Bowel Disease – Erealda Prendaj & Gitit Tomer

“This study is important to ImproveCareNow (ICN) and the larger pediatric IBD community because it highlights that through quality improvement (QI) interventions, we can improve patient follow up rates.”

We are committed making the results of ICN Research accessible so everyone can understand and take advantage of what’s being learned. ICN Research Explained posts are coproduced by study authors and members of the ICN Parent Working Group Research Subcommittee.

Ulcerative colitis and my relationship with food – Leela Maitra

Food has always played a big role in my household, so this disease has been very hard on me.

Leela introduces herself as a new member of the Patient Advisory Council (PAC) with a post about diagnosis, ostomy surgery, and the roles of food and family in life with IBD.

I can overcome obstacles – Vanessa Little

“I have learned that I am brave and can handle whatever is thrown at me. I appreciate that even though I have a disease, I can overcome obstacles.”

New PAC member, Vanessa, introduces herself and shares a bit about her treatment challenges and the side effects she juggles, as well as what she does to overcome pain and use her experiences to help others.

Chronic illness can't be solved like an equation. – Natalie Beck

“So while we're using what's known to try to understand as much as we can about IBD - symptoms, treatments, nourishment, mental health, comorbidities, etc. - let's not forget about the importance of patient experience.”

Natalie reflects on how unique and vital the patient experience is – and how considering all she has gone through has helped her recognize her own strength and ability to cope.

What I Need, When It’s Needed – Prioritizing What Our Community Wants and Needs – David Hartley

“In February 2019, the ImproveCareNow Engagement Team surveyed CIRCLE community members to identify information, knowledge & know-how that could benefit others living with IBD and their families/caregivers.”

This post is the first in a series where the ICN Engagement Team explores the results of their "Content Prioritization Survey" - better known as ImproveCareNow's effort to get the right information into the right people's hands at the right time(s) so they have What is Needed, When it's Needed (#WINWIN).

Never stop sharing your story! – Natalie Beck

“I was surprised when he told me that reading my stories had taught him so much about me and about IBD! I was surprised because I figured that he knew most everything about my health already.”

Reading Natalie’s stories taught her Grandpa more about her life with IBD than she imagined they would, and this reminded Natalie how important it is to keep telling her story because there is always more for people to understand.

Patient Perspectives on Telehealth and In-Person Care in the Time of COVID-19 – Rohit Aita

“We believe these perspectives are important for individuals with IBD to review and consider, because the quality of our care is directly tied to our long-term health and wellbeing.”

In this post, members of the Patient Advisory Council share perspectives on accessing telehealth and in-person care in the time of COVID-19 and give their recommendations for improving together.

We are thankful for each and every one of the stories shared by folks across ICN! It is our hope that as more people stay #InTheLOOP with our posts we can:

  • continue to bring critical awareness to chronic illnesses (like Crohn's disease and ulcerative colitis) that can be misunderstood because they are not always visible
  • encourage people to connect with each other, to share information and support, so no one feels alone on their IBD journey
  • build passion and momentum for our shared work of improving health & care of young people living with IBD
  • keep the lines of communication open so we can all feel empowered to keep #TalkingAboutIBD

We look forward to sharing even more stories and perspectives in 2021 💚💙


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