Finding friends and family who understand and support your IBD is a treasure. Connecting with those who experience it firsthand is irreplaceable.
The goal of Healthline’s new IBD app is to offer a place for such a connection.
Created for people living with Crohn’s disease or ulcerative colitis (UC), the free app offers one-on-one support and group advice from people who understand what you’re going through, whether you’re newly diagnosed or a seasoned vet.
“It means the world to me to be able to connect with someone who ‘gets it,’” says Natalie Hayden, who was diagnosed with Crohn’s disease at the age of 21.
“When I was diagnosed with Crohn’s in 2005, I felt so isolated and alone,” she says. “I would have given anything to have the ability to reach out directly to people with IBD and share my fears, concerns, and personal struggles without fear of judgement. It’s resources like this [app] that empower us as patients and show us how life goes on, even when you have a chronic disease.”
The IBD app matches you with members from the community every day at 12 p.m. Pacific Standard Time based on your:
- IBD type
- lifestyle interests
You can also browse member profiles and request to connect instantly with someone. If someone wants to match with you, you’re notified right away. Once connected, members can send messages to each other and share photos.
“The daily match feature encourages me to reach out to people I wouldn’t otherwise interact with, even if I saw their profiles on the feed,” says Alexa Federico, who’s been living with Crohn’s disease since she was 12 years old. “Being able to chat with someone instantly is great for anyone needing advice ASAP. It adds a [sense of] comfort knowing [there’s a] network of people to talk to.”
Natalie Kelley, who was diagnosed with UC in 2015, says it’s exciting knowing she’ll get a new match every day.
“It’s easy to feel like no one understands what you’re going through, but then realizing that each day you get to ‘meet’ someone who does is the most unique experience,” Kelley says. “The moment you have a conversation with another IBD fighter and have that ‘You get me!’ moment is magic. Having someone to message or text when you’re lying awake at night with anxiety about IBD or feeling badly for missing another social outing due to IBD is so comforting.”
When you do find a good match, the IBD app breaks the ice by having each person answer questions to help get the conversation going.
Hayden says this made onboarding intuitive and welcoming.
“My favorite part was the ice-breaker question, because it made me pause and think about my own patient journey and how I can help others,” she says.
If you’re more into chatting with several people at once rather than one-on-one interactions, the app offers live group discussions every day of the week. Led by an IBD guide, group talks are based on specific topics.
Examples of live group discussion topics
- treatment and side effects
- relationships with family and friends
- being newly diagnosed
- emotional and mental health
- navigating healthcare
“The ‘Groups’ feature is one of the most valuable parts of the app. Unlike in a Facebook group where anyone can ask a question about anything, the [guides] keep conversations on topic, and the topics cover a wide variety,” Federico says.
Hayden agrees. She notes it streamlines the app experience because you can tap into topics that align with your needs and interests. She finds the “Personal Community” and “Inspiration” groups most relatable.
“I have a 2-year-old and a 4-month-old, so I always find it helpful to connect with fellow IBD parents who understand my daily reality. I have a great support network for family and friends, but having this community enables me to reach people who genuinely know what it’s like to live with this chronic illness,” Hayden says.
For Kelley, the groups for diet and alternative medicine, mental and emotional health, and inspiration resonated the most.
“Being a holistic health coach, I know the power of diet and have seen how much dietary changes helped my ulcerative colitis symptoms, so I love being able to share that knowledge with others. I also think the mental and emotional health side of IBD is a topic that isn’t discussed enough.
“I know I had a difficult time opening up about my mental health struggles after my IBD diagnosis. But realizing how interconnected they are and feeling empowered to speak out about it, and showing others that they aren’t alone if they’re feeling that way is a huge part of my mission,” Kelley says.
She adds that as a wellness blogger, her daily goal is to inspire others.
“Especially those with IBD. Having a whole group [in the app] dedicated to inspiration is so incredibly uplifting,” she says.
When you’re in the mood to read and learn rather than discuss and chat, you can access handpicked wellness and news stories about IBD reviewed by Healthline’s team of medical professionals.
In a designated tab, you can navigate articles about diagnosis, treatment, wellness, self-care, mental health, and more, as well as personal stories and testimonials from people living with IBD. You can also explore clinical trials and the latest IBD research.
“The ‘Discover’ section is great because it’s truly news you can use. It’s like a news outlet specifically geared towards IBD,” Hayden says. “I’m always trying to educate myself about my illness and others [people’s] experiences so I can be a better patient advocate for myself and for others in the community.”
Kelley feels the same.
“I am constantly doing research about IBD and gut health for my own sake and for the sake of my clients and community on Instagram and my website,” she says. “Being able to simply click on ‘Discover’ and find all credible IBD-related articles makes this process so much easier.
“I think education is empowerment, especially when it comes to living with a chronic disease. I used to never do research because it made me feel overwhelmed, but now I realize the more I know about my disease, the better off I am.”
The mission of IBD Healthline is to empower people to live beyond their IBD through compassion, support, and knowledge. Moreover, it looks to provide a safe place to find and receive advice, seek and offer support, and discover the latest IBD news and research curated just for you.
“I love how supportive of a community it already is. I’ve tried joining other support groups or chat boards before and always felt as if they turned to a negative place pretty quickly,” Kelley says.
“Everyone in this app is so uplifting and genuinely cares about what we’re all sharing. Being able to root each other on in our IBD journeys makes my heart so happy,” she adds.
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.