I was really sick for the last two years and it’s really sucked. Some days I thought I might be dying. No one knew what was wrong with me. I was finally diagnosed in May and I found the spoonie community on Tumblr, which has been one of the biggest supports since then…I just started [Biologic X] though and I’m feeling a lot more like my old self.
Information- and Support-Seeking from Online Community
28% of posts highlighted the importance of the online community in supporting individuals as they navigated the available biologic treatment options.24 Many of these individuals went online looking for specific information about biologics. Others looked for support and reassurance regarding their IBD illness experience. For example, the individual below expressed appreciation for the support from an online IBD health forum community:
The analysis also found that even after individuals received medical advice from their healthcare providers, many still turned to social media with questions and to validate their experiences. Here is a representative post:
[Biologic X] question: I have been lurking here since diagnosis in 2006, the help has been awesome. I had a resection, small bowel, this past December, pancreatitis from 6mp and now I am on [Biologic X]. I feel my Crohn's is still active, since they did not remove all disease with surgery. My GI wants to do pill cam again. Have had one infection after another (UTI) and have been on antibiotics off and on for eight months, due to [Biologic X], I think. Now, finally my question... would it be unreasonable to stop [Biologic X]?