Crohnology is a community for people with inflammatory bowel disease, focused on providing the best available info for dealing with the disease. For those of you with UC or Crohn’s, I want to tell you why I joined — and why it makes sense for you, too.
I was diagnosed with Crohn’s more than 20 years ago, and have been ‘online’ with the disease for more than a dozen years. I’ve spent a ton of time asking and answering questions from other patients, but I always feel like the info I get and give is incomplete. I mean, so what if Humira didn’t work for me? It will probably work for most people, right?
When I joined Crohnology, I put all the information I could about my disease into their profile tool. That meant remembering decades of drugs and surgeries, but I got as much as I could on there. I update it occasionally, to indicate new treatments or flares, so my profile on Crohnology helps me track my health with respect to the disease.
What makes Crohnology awesome is that it takes my information and combines it with other members’ info to rank the best options for medicine, supplements, diet, and other therapies. For example, I never would have guessed that ‘No Beer’ is the #1 diet ‘treatment’, or that ‘yoga’ is the #1 mind and body treatment.
So not only can I see that Humira — which didn’t work for me — is ranked 7th in medicines by the Crohnology scorecard, but I’ve also learned about new medicines that I would have never considered, and found out that some others really don’t work for anybody. I can ask questions of other patients, too, if I need more specifics.
Because Crohnology is also a social network for people with IBD, it helps me meet people who also have the disease. I can use the site to find or even organize support groups and other get-togethers in my area.
Crohnology is also partnering with the CCFA and other organizations and companies to provide research opportunities at the cutting edge of IBD medicine. My profile is private, which is very important to me — but I will let Crohnology share my (anonymized) data with anyone who can use it to improve treatment and outcomes for patients like me.
I work for Crohnology — in the spirit of full disclosure — but that’s not why I want you to join. Rather, I want more people on Crohnology because the more people we have, the more information we have, the more reliable that information is, and the more we as a community can contribute to research on these diseases.
If you have Ulcerative Colitis or Crohn’s disease, consider joining Crohnology. Thanks!