Here's How Social Media Helps the IBD Community

IBD Healthline is a free app for people living with Crohn's disease or ulcerative colitis. The app is available on the App Store and Google Play.

When Laura Scaviola was 25 years old, she found herself unable to eat or drink without running to the bathroom and experiencing severe, bloody diarrhea. Dehydration landed her in the emergency room, which led to a colonoscopy that confirmed she had ulcerative colitis (UC).

After taking six different medications and enduring a roller coaster of remissions and flares, Scaviola is currently in remission for the longest span of time since her diagnosis in 2013.

To help her cope with the disease, she found support in online communities.

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"Social media allowed me to find a community of fighters with the same chronic illness I have," says Scaviola. "The diagnosis and symptoms can be very isolating and embarrassing. But seeing the number of fighters share their experiences made me feel like I could have a better life too."

Megan H. Koehler can relate. When she was diagnosed with Crohn's disease in 2017, she says social media allowed her to feel less alone.

"Before I was diagnosed, I'd heard of Crohn's disease and UC, and I knew a few girls in college who were diagnosed, but other than that, I really didn't know much. Once I had a diagnosis and started sharing more on Instagram, I was flooded with amazing comments and words of hope from others," Koehler says.

Natalie Suppes appreciates social media because she knows how living with UC was before online communities became mainstream.

"When I was diagnosed in 2007, the only thing available at the time was a forum with people who have IBD that I found on Google. Ever since I have found the IBD community online, I have felt very empowered and so much less alone," says Suppes. "We literally spend the majority of our day alone in the bathroom or alone in pain. Having a community of people online who are dealing with the exact same thing as you are is really life changing."

Apps bring comfort and hope

Technology that is geared towards those with a chronic illness, this includes apps, can offer a number of benefits, from connecting folks to individuals with shared experiences to shedding light on new clinical trials.

In fact, a 2018 review of 12 randomized controlled trials on mobile health applications (including apps) showed that, in 10 of the trials, the use of mobile health applications demonstrated significant improvements in some health outcomes.

Yet with so many apps to choose from, finding the right one for you can be challenging.

For Scaviola, finding an app like IBD Healthline helped narrow down her online resources.

"IBD Healthline is different than other online support communities because it's an all-in-one resource. You can connect with other patients, share information in group conversations, and there are helpful articles on IBD all in one app," she says. "The best part is you are matched with fellow members on the app, so you can connect with them and share your journey."

Designed for people living with Crohn's or UC, the free IBD Healthline app includes features such as daily group discussions led by an IBD guide. The guide leads topics around treatment, lifestyle, career, relationships, new diagnoses, and emotional health.

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Koehler says IBD Healthline is different than other online resources because everyone using the app has IBD.

"There is more understanding and compassion. In the past, I've used Instagram to reach out and it's hard because people will share advice because it worked for their mom or best friend… not because they've been through it personally," says Koehler.

Keeping the IBD experience in one private place is what Suppes like most about IBD Healthline.

"It is a place where you can go when you are seeking advice, but you don't need to constantly see it on your newsfeed along with the other things you follow on social media, such as pictures of your niece and best friend," Suppes says. "It is a place where you don't have to worry [about] anyone ever seeing what you post, or that you belong to the group, because only others who have IBD are in the community."

Plus, the app's live chats personalize the experience, Suppes adds.

"It's awesome to connect with people in live time and chat about various IBD subjects," she notes.

Koehler agrees, and says her favorite feature of the app is private messaging.

"I've really enjoyed chatting with other IBD sufferers in a more private setting. It allows us to chat a bit more about stuff we might not be open to sharing with everyone just yet," she says.

Access to trusted sources of information

In addition to connecting with others living with IBD, IBD Healthline offers handpicked wellness and news stories reviewed by Healthline's team of medical professionals delivered to app users each week. Users can stay informed about new treatments, what's trending, and the latest in clinical trials.

With that information and the app's ability to connect her to others living with IBD, Suppes says she feels empowered to take ownership of her own health.

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'[Social media] is a tool that helps us realize that we are in control of our own health," she says. "It is not possible for doctors to have touch points with hundreds of thousands of people who have IBD, but by using social media we are. Sometimes with new medications or new symptoms, just asking other people with IBD and getting feedback from people experiencing the same things is so helpful."

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Cathy Cassata is a freelance writer who specializes in stories around health, mental health, and human behavior. She has a knack for writing with emotion and connecting with readers in an insightful and engaging way. Read more of her work here.