What even is ulcerative colitis (UC) anyway? You just heard these two words for the first time, and they were probably paired with “no cure,” “colonoscopies,” “chronic,” and a myriad of other scary words. It’s a lot to unpack when you learn you’re living with a chronic condition like UC. The good news? There are p-l-e-n-t-y of people who have sat right where you’re sitting, and they are talking about it on social media.
Not to toot my own horn here, but I do tend to post things about my life with UC on my Instagram account, @caitpilksmith. I don’t have thousands of followers, but I do have an unfiltered take on life in general with a chronic illness. Of course, I pull inspiration and topics from other great content creators, so here are the top people you should keep tabs on, particularly on Instagram:
@about_IBD
I was fortunate enough to be on an episode of Amber’s podcast of the same name last year. We talked about shared decision making between patients and doctors. She truly is an authority in the space and doing all the work to bring more awareness to patient resources. Amber was also diagnosed in 1989 and received a j pouch in 1999, so she’s seen many iterations of treatment and the evolution of accessibility over many years.
If you want an educational podcast and straightforward information about IBD, follow Amber.
@Aliontherun1
Ali garners nearly 50K followers, and she has a podcast all about running. As a lifelong runner, that’s what initially introduced me to her. But she also lives with Crohn’s Disease and was diagnosed at a very young age. She’s vocal about the struggles of running with bathroom challenges, and she’s also shared very real insights into her on again, off again flare-ups. Plus, she’s hilarious and has a really adorable daughter, Annie.
If you want relatable UC content with a twist of running, humor, momming, and general everyday merriment, follow Ali.
@crazycreolemama
President of @ibdmoms (another great follow!), Brooke is a wonderful voice for those living with IBD. Even her bio makes me chuckle, as she identifies as “living with a fake colon,” a sentiment all too relatable to many of us. She’s also vocal about her political advocacy and connecting with causes and politicians that can change the landscape for patients everywhere.
If you want inspirational and relatable IBD content, as well as insights into the brains behind IBD Moms, follow Brooke.
@Ibdgirls
A partner of The Mighty’s IBD support group, this community of womxn living with UC and/or Crohn’s is the most welcoming. They post helpful stats, updates on studies, community Q&As, and inspirational quotes to get anyone through the toughest day with UC. Plus, they are great at responding to DMs. With around 18K followers, they’ve definitely earned their spot in the space as a well-informed source of truth.
If you want informative content around statistics, research, and data, follow IBD Girls.
@ibdsocialcircle
This is just what their bio says: “IBD Social Circle is a community dedicated to supporting and educating the #IBD online community. This page is intended for US residents 18 and older.” The account shares helpful tidbits relating to living socially with IBD, and they regularly tap other advocates for insights related to life with IBD – many of which are also on this list!
If you want some informative content around IBD that doesn’t feel as heavy as a doctor’s office, follow IBD Social Circle.
@natalieannhayden
This is one of the first faces of IBD I found when I was growing my own presence on Instagram. Diagnosed with Crohn’s way back in 2005, Natalie is a mom and outspoken advocate for patients everywhere. She’s frequently posting about being a podcast guest and authoring IBD articles for sites like Everyday Health. I love her account because it’s relatable to my own life situation (being a mom with IBD).
If you want to see more of the everyday life living with IBD from an authority in the space, follow Natalie.
@ownyourcrohns
Tina is one of my favorite people to cheer for in the IBD space. She founded the South Asian IBD Alliance (@southasianibd), a nonprofit organization focused on decreasing disparities in care and increasing treatment access among the South Asian community. But that’s just one of her accolades.
If you want to witness the work that goes into massive patient advocacy and feel reassured that people are out there fighting for us, especially the BIPOC community, follow Tina.
@weareromanwell
This is a newer resource I was made aware of in 2022. An IBD dietitian founded the company to make eating with IBD less confusing. Not only is their Instagram grid aesthetically pleasing (it totally draws you in), but the nutrition content they post is also super helpful. They focus on fueling healthily with IBD and present out-of-the box ideas that you don’t normally find on evergreen articles touting “10 ways to …”
If you want nutrition-based tips that don’t feel inaccessible to you, follow Romanwell.
Of course this is not an exhaustive list of people who are doing the big work to raise awareness. There are so many people out there waiting to help you and waiting for you to discover them. Here are my top tips for finding even more resources on Instagram (and any platform):
- Follow relevant hashtags. #IBDwarrior, #colitis, #crohns, and others are a productive way to connect with other people in the community.
- Look at the “following” list for any of the above accounts. Chances are, they are following other advocates in the space.
- Send a direct message. Ask them for ideas!
- Scroll to the bottom. If you have favorite websites, such as the Crohn’s and Colitis Foundation, scroll all the way down to find their social icons.
Social media is a lot of things, but it is nothing if not a place to connect with others over similar experiences and like-minded thinking.
