How a social network is helping IBD sufferers 

AdTaxi-PharmAdv-SocialCrohns1A recent report from eHealth Initiative, a nonprofit that supports the standardization of health information technology, has found that social media can “prevent behavioral risk factors associated with chronic disease through enhanced health education, communication and behavior change.” But social media isn’t just helping people avoid chronic diseases, it is also aiding those living with them.

A 2013 review published in the Journal of Biomedical Informatics found that all studies on social media’s impact on the health of chronic disease sufferers were positive, with none recording adverse effects.

One online community that’s positively impacting the lives of people living with the inflammatory bowel diseases Crohn’s disease and ulcerative colitis (UC) is Crohnology. It connects nearly 7,000 people in 82 countries via its website and mobile app. Crohnology was started in 2011 by then 25-year-old, self-described “life hacker” Sean Ahrens, himself a Crohn’s sufferer, who wanted to enable people with inflammatory bowel diseases to connect and share their experiences and struggles.

Crohn’s disease and UC are autoimmune diseases that affect the digestive tract. The immune system reacts abnormally to food or bacteria in the intestines. Instead of creating antibodies to fight off germs, the immune response targets the cells of the bowels instead. Over time, these attacks can cause chronic inflammation and damage to the digestive tract. Treatments for Crohn’s disease and UC include drug and nutrition therapy and, often, surgery.

Today, patients can use Crohnology to connect with peers, share stories about their illnesses, and seek new ways to reduce and relieve symptoms.

“We get to create a great record of how they’re doing compared to the treatments they’re taking,” Ahrens said in a 2013 Stanford Medicine 2.0 video.

One of the website’s features is a slider that lets patients record how they are feeling in real time. Options range from “Yuck!” to “Fantastic!” This information can be especially helpful for physicians who may only see patients once every six months or less, Ahrens said. “I think this is an idea that shows the potential for mobile health.”

Ahrens’ aspirations for Crohnology are to be more than just a Facebook for Crohn’s and UC sufferers. He bills the site as a “patient-powered research network” and offers doctors, researchers and other health professionals the opportunity to join the conversation online.

In time, Crohnology and other social networking sites, including PatientsLikeMe, CureTogether and Inspire, could lead a revolution in crowdsourcing treatments and cures for hundreds of conditions. That’s fantastic news that definitely deserves more than a simple “like.”