LOOP Blog

It happens in a series of moments. Sleepless nights. Weight loss. Pain that gets worse with every day. Seeing test results of climbing inflammation numbers. I describe it distilled into one single moment: waking up from my first colonoscopy and hearing the words “ulcerative colitis.”

Would you rather be unable to use school bathrooms or have to have bi-weekly colonoscopies?

We (Becky & Shira) are going to be answering some "Would you Rather" questions and telling spooky stories from Halloweens past, where we have had some close calls and moments that can only be considered entertaining in hindsight. 

Have you ever wondered what a doctor might be thinking or feeling when you open up about what's going on physically and emotionally because of IBD - the good, the bad, the embarrassing, the frustrating? When they deliver an IBD diagnosis to a family? When they want to be a source of answers? During her #IgniteTalk at the Fall 2021 Live Online Community Conference, Dr. Rana Ammoury let us peek inside her experience as a pediatric GI and an ICN participant for the past seven years. Her story, beautifully written and delivered, is a genuine reminder of the power of vulnerability, humanity, community and hope. 

Be inspired by Rana's #IgniteTalk 🔥 

Do you need an IBD family? Martha knew instinctively that she did, from the moment her family first started their journey with Crohn's disease. So, she volunteered to start a pediatric family support group at her local care center. It took some time for the group to gain traction - nine months, in fact. But thanks to Martha's "pleasant persistence" and the active involvement of their pediatric GI provider, the group is now thriving - supporting and encouraging each other (both the parents and the kids), working side-by-side with patients and providers to better care, and offering newly diagnosed families a safe and welcoming place to find their footing surrounded by people who truly understand. As Martha puts it, "I had no idea who I would meet or how we would all interact, but I knew that if I needed an IBD family, others did, too."

Be inspired by Martha's #IgniteTalk 🔥 

Hi, it's Vanessa from the PAC! School is busy right now, but fellow-PAC-member, Fionna and I made time to sit down and record a podcast episode where we chat about personal experiences we've each had changing our IBD treatment plans and how this fits into school and life for us.

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.