For example, a study published in November 2016 in the journal Inflammatory Bowel Diseases found many young people in particular want to use social media to manage their IBD and find educational information about their condition. “Social media can connect patients to both an online community and reliable information,” says Dana Lukin, MD, a gastroenterologist at Weill Cornell Medicine, in New York City. “Online community support can help patients geographically separated from an in-person IBD community or those with busy lives that might not be able to — or if patients are apprehensive to — attend in-person support groups.” For Marisa Troy-Garufi, 33, a UC patient advocate, having social media has been amazingly helpful. “The more we share on social media, the more others will realize they are not alone,” she says. “Hopefully it will empower more people to share their reality as well as hopefully educate the public, doctors, and the media in the process.” Here are some of the most informative and helpful UC Twitter accounts to follow. @CrohnsColitisFn As the official handle for the Crohn’s and Colitis Foundation, this account provides up-to-date research on UC so its followers are consistently informed on medical advancements. The organization often hosts IBD experts on its social media platform, where participants can ask questions in real time about symptoms, treatments, and more. Plus, the handle offers ways to get involved with colitis advocacy groups and raise awareness about the disease. @IBDMD David Rubin, MD, is the gastroenterologist behind this wildly popular Twitter handle dedicated to IBD and UC. As a professor and codirector of the Digestive Diseases Center at The University of Chicago Medicine, Dr. Rubin tweets pertinent information for people with UC regularly. But it goes beyond the usual updates on recently released studies and research: Rubin offers actionable information on topics that are important to people with IBD, including information about J-pouch care, healthcare access, and more. @JournalingIBD Troy-Garufi launched her Twitter account after starting a blog, Journaling IBD, about her UC journey. “I hoped that someday I would be able to help others who were struggling like me,” says Troy-Garufi, who was diagnosed at age 13. “My main goal was always to reach the ones who were suffering and feeling very alone.” Her handle covers the raw, often embarrassing and isolating feelings that come with managing colitis. “I like to tweet about articles which focus mainly on the socioeconomic factors of living with a form of inflammatory bowel disease,” she says. @DanSharpIBD Dr. Lukin frequently tells her patients to check out Twitter accounts “which actively challenge articles or accounts disseminating false claims and medical disinformation.” One of her recommendations, she says, is @DanSharpIBD. “[He also has] useful articles on common disease-related misperceptions, such as, ‘My medication is causing hair loss.’” Sharp writes at DanSharpIBD.org and advocates for people with chronic illnesses such as Crohn’s and UC, using evidence-based reporting to debunk common myths about IBD. @IBDrelief This United Kingdom–based handle dives deep into the sometimes-embarrassing questions and concerns that many people with colitis have, including how to adjust to life with a stoma and how to survive a colonoscopy. IBDrelief cofounder Seb Tucknott, who also has UC, started the organization with his wife, Emily, to help people with IBD navigate common issues in a safe, virtual environment.
