The moral of the story in episode 35 of imPACt is: don't do what Becky did. 

Join me (Fionna) and my fellow PAC members, Christian and Shira for our conversation with the hosts of the NASPGHAN podcast, Bowel Sounds, Dr. Temara Hajjat and Dr. Jason Silverman. We discuss what we wish providers knew from the patient perspective and uncover what providers wish patients knew. 

IBS (irritable bowel syndrome) and IBD (inflammatory bowel disease) are different disorders that intersect sometimes. Join Shira and I (Maddie) as we share our experiences and talk with Carlo Di Lorenzo, MD about IBS, IBD, and the complex and fascinating interactions between the brain and the gut.

When I was diagnosed with ulcerative colitis at 14 years old, I was shocked. I was lucky enough to already have some familiarity with the disease, but I never thought it would happen to me. I had every single textbook symptom, but I still felt so numb and so distant from the new reality I had to face. This isn’t an uncommon feeling, and it can be really hard to know where to start. IBD is a complex disease, so here are some things I found helpful while learning to navigate those first few months after my diagnosis.

The PAC released episode 1 of our imPACt podcast on February 28, 2021. Join Vanessa and Fionna as they celebrate one year of imPACt and chat about some of their favorite parts of podcasting, share which episodes they like the most, and talk about where the podcast may be headed in the future.

Join 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

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. 

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 🔥 

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.

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.