I remember feeling so alone in my illness. I was diagnosed with at age six and I grew up alone with this disease I was told I had and would never go away. I was surrounded by so many people but felt so peculiar because I was the only one with this disease. I always wondered to myself, “why doesn’t anyone else have this thing called Crohn’s disease?” and “why am I the only one with it?”

In November of 2021, I was diagnosed with IBS or irritable bowel syndrome. I had an uninvited, new irritable friend that became a part of my daily life, just like my IBD. Leading up to being diagnosed, I had been experiencing gut-wrenching belly pain, nausea with pain, and fluctuations between painful constipation and uncontrollable and very urgent soft stools. I knew something wasn’t right. I had experienced fluctuations of stool type from my IBD, but this time it was different. 

I'm 19 years old, and I have Crohn's disease. I was diagnosed in 2012 when I was eight years old. One interesting fact is that I know how to surf even though I'm from West Virginia. I struggle the most with not letting Crohn's consume my life.

I have been surrounded by medications and taking pills my whole life. Between being diagnosed with Crohn’s disease at six years old and being diagnosed with IBS recently, with all the different medications I have to take every day and have had to try - feeling overwhelmed is an understatement!

February 6-10, 2023 is Feeding Tube Awareness Week! I think it’s very clever to have something like this because it seems like most people are ashamed or feel insecure when having a feeding tube; it shouldn’t be like that. A feeding tube isn’t an embarrassing thing to have. We should be grateful to have such a thing when we need it, so we don’t get even more sick.

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

We've been getting to know ICN staff members through our imPACt ImproveCareNow network series (last time we talked with Chris Keck about why storytelling matters). In this episode, join Caitlyn, Vanessa and I (Fionna) for a chat with Sydney Bogardus who supported the PAC and the PFAC (Patient/Family Advisory Council) for several years before taking on another role in ICN.

LOOP is an important place for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, build confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

So far, in 2022, 41 stories have been published by patients, caregivers, clinicians, collaborators, researchers, staff & leaders from across the ICN community sharing their unique perspectives on and experiences with IBD. Our top stories this year have covered a variety of topics, including: research on diet and fatigue, innovative IBD projects, new member introductions and top tips for newly-diagnosed patients, conversations about medical trauma, collaborating with IBD caregivers, and gratitude for leadership and learning together so we can all improve the health and care of people living with IBD.

Autonomy means being in control of your own decisions. For pediatric patients living with IBD, there comes a time when you get to start making decisions about your health and care more on your own. Join me (Hannah), Leela, Kera, Fizza and Ryleigh for a chat about patient autonomy in IBD care.

What if your closest friend had a habit of interrupting your plans and not listening when you begged them to stop? You might might wish to end that friendship. But, as Mahalakshmi points out in her #IgniteTalk, which she shared at both our in-person and our virtual community conference this fall, when "friend" is really a metaphor for IBD there isn't really a choice. 

Be inspired by Mahalakshmi's #IgniteTalk 🔥