LOOP Blog

When Shira joined the Patient Advisory Council - in October 2020 - she wrote that she was looking for a place where she could use her voice to influence the quality of care other people receive - to change someone else's life for the better. Since then, she has set about doing just that - co-chairing the PAC's Advocacy Taskforce and joining the imPACt podcast where she has contributed to patient-led discussions on topics ranging from Parent-Patient Relationships to Arthritis to Queerness & IBD. In her Fall 2021 Live Online Community Conference Ignite Talk, Shira brought us deeper into her IBD journey by sharing a raw and beautiful account of her own self-inquiry and discovery, of learning to lean in during the dark moments and hold space for the hard feelings IBD brings. She challenged us, as she has challenged herself, to acknowledge that, yes, IBD is a burden and it brings a certain loss of control, but it does not mean the loss of one's happiness or identity.

Be inspired by Shira's #IgniteTalk 🔥 

Dr. John Grunow was one of the first pediatric gastroenterologists to join the ImproveCareNow Network - 15 years ago. He's been a dedicated improver ever since. Recently, John retired from active clinical practice but continues his work with ImproveCareNow. We are so grateful that he agreed to share his story in our very first clinician ignite talk - at the Fall 2021 Live Online Community Conference. Thank you, John.

Be inspired by John's #IgniteTalk 🔥 

My name is Lordis, I am a 16 year old senior in High School and I have Crohn’s disease. I work at TJ Maxx part time, as well as with children at my local community center. A lot of people don’t know that I like to paint and make bracelets.

In my first post I said that I wanted to write about my experience with foods that I eat as a vegetarian living with ulcerative colitis. For this post I felt like writing about something that's not food-related, but that I think goes hand-in-hand with a healthy, balanced diet. Today, I'm writing about exercise.

This week's imPACt podcast episode is all about the upcoming Fall 2021 ImproveCareNow Live Online Community Conference!

On Thursday, September 30 and Friday, October 1, ImproveCareNow will host their fourth Live Online Community Conference (LOCC). Sessions begin on September 30 at 9:30 AM ET (8:30 AM CT, 7:30 AM MT, 6:30 AM PT) and continue through 5:30 PM ET when a casual Post Conference Exhibitor Time begins. Sessions resume again on October 1 at 10:00 AM ET and continue through the early part of the day, with a wrap up scheduled at 3:40 PM ET. 

All are welcome to join us for this interactive, online event where we plan to all teach and all learn about topics including: IBD, identity and intersectionality; building community and co-producing during physical distancing; fatigue and sleep difficulties; body image & disordered eating; and cultivating safe and successful patient-provider relationships.

Check out this episode of imPACt, where PAC and Parent Working Group members chat about how they've experienced the evolution of the patient-parent relationships and what this looks like in the context of IBD care.

In preparation for presenting a breakout session about Fatigue, Sleep, and IBD at the upcoming Live Online Community Conference (LOCC), Nour and I (Maha) have shared our own personal experiences with and perspectives on IBD-related fatigue.

It’s back to school time! For me (Fionna), accommodations and communicating with my professors have been super helpful! Let’s see what PAC members have to say about managing IBD at college, and how it impacts their routines.

I’m Shira, one of the Advocacy Co-Leads for the PAC. Listen in as fellow PAC member, Caitlyn, and I talk with Pediatric Gastroenterologist Dr. Rachel Bensen and Pediatric Rheumatology Fellow Dr. Sara Patrizi about IBD Associated Arthritis.