Our second crowdsourced study is live.
We knew since day 1, that the rheumatoid arthritis study wouldn’t be our only crowdsourced research. After we made new friends at IBDCoach, we saw how proactive the IBD community is. Their Facebook group, Achieving Remission from Crohn’s Disease and Ulcerative Colitis, is active and engaged and curious. Perhaps, most importantly, the folks at IBDCoach — Andrew and Shae — are energetic and hopeful. (And they’re IBD Warriors themselves!)
These are all the qualities of promising citizen scientists, so we hopped into their online community. They answered our questions and we shared scientific research.
IBDCoach’s Facebook group, Achieving Remission from Crohn’s Disease and Ulcerative Colitis. (You can request to join by searching for it on Facebook!)
We also fell down a Reddit rabbit hole. (r/IBD, r/CrohnsDisease, and especially r/ostomy). Some Redditers could recap their whole health journey in a single comment. Their answers were humbling. There were many cautionary tales about preemptively coming off biologics, feeling fine, and suddenly losing it all — 1 flare could cost you your colon (aka: your ability to poop).
Our team asked some gastroenterologists about flares and we learned that there’s no sure-fire way to predict when they’ll start, how bad they’ll be, or how long they’ll last. As a result, it’s hard for doctors to be certain about the right course of treatment. And it’s hard for patients to know what to do, period.
“Do I need to cancel plans?” “Can I leave my house, or will I need to run back to the bathroom the second I reach the door?” Some flares could mean running to the bathroom up to 20 times in a single day! These are some of the first-hand accounts we heard talking to folks in-person last weekend at the Crohn’s and Colitis Foundation Take Steps event. While we volunteered, our team got a chance to chat with a lot of IBD Warriors. Folks of all ages shared the same sentiment, IBD flares are isolating.
During the COVID-19 pandemic, we all experienced some sense of isolation and saw those devastating effects on mental health. A lot of people said the uncertainty was the worst part of COVID lockdown, and we heard the same about IBD flares.
And what makes flares so isolating also makes them so hard to study. Until now.
Words from ImYoo team members on our IBD study investigating flares.
There aren’t many flare studies so far. With our decentralized immune studies, we want to change that. We want to mail you self-collection kits, so you can sample yourself during flares and stable conditions. Your flares are critical windows of opportunity to look at your immune cells.
We hope our decentralized immune study can remove some of the uncertainty associated with IBD. Maybe we’ll find biomarkers for predicting flare severity or duration. Maybe we’ll identify targets to guide treatment. Flares are largely uncharted territory, so we don’t know what we’ll find. What we know for sure is that we want to help IBD Warriors finally take charge. When a flare strikes, they can strike back, as citizen scientists. The science is in their hands.
If you’re an IBD Warrior, sign up to potentially join this study from home.
If you want to see the IBD study happen as soon as possible, make a donation to help us cover the costs. Our budget is clearly broken down on our Kernls page, so you can see where every dollar goes.
If this article gave you a newfound appreciation for your ability to poop, or you just think empowered patients are the future of scientific discovery, like we do, then share this article and share our page!
Our feature in Natalie Hayden’s blog, Lights Camera Crohn’s, where the flare study launch was first released on October 17th, 2022.
You can also follow along the flare study in our Medium thread.