Shoebox Memoirs

Have you discovered Crohnology?

“Crohnology is a project with one ultimate goal: to build a patient-centered information sharing network for people with chronic medical conditions. We envision a world in which every patient can instantly tap into the knowledge and experiences of every other, so that every patient can learn how well treatments have worked for others, whether they are alternative, experimental, or prescription.

People with medical conditions walk around generating an incredible amount of data about their health every second of every day, but we just let that data disappear. We don’t know how well most treatments actually work in the wild. Crohnology allow patients to collaborate, share health and treatment information with each other, and track and share their health. Patients learn from each other’s experiences in a massively scalable way. This turns the traditional medical model on it’s head. We think this is a better model for medicine for patients living with chronic conditions.

Crohnology is currently open in beta specifically for people with Crohn’s or Colitis. These are a pair of incurable, autoimmune diseases that cause inflammation throughout the digestive tract.”

I discovered Crohnology right before I had my colon removed to get my jpouch. I think this site it an awesome tool that could really help out a lot of people who are recently diagnosed, looking for support, or just looking for answers. Patients are really the best doctors. They know what you’re going through and could probably give you better advice than any doctor could.

Most doctors these days only talk about western medicine and pay no attention to alternatives. There are many people who have tried alternatives and were successful. Crohnology will show you many different treatments that people use and show how successful that they are. You might discover something new that might interest you in trying it.

Being diagnosed with IBD myself, I have felt alone plenty of times. It wasn’t until I went online and searched for people on Twitter that I could openly share what I’ve been dealing with. Crohnology has a map of the world that shows where its users are located. You just might find someone that’s in your area that could relate to you.

Another thing that this site offers is its health tracker. Much like the Facebook status, you update the status of your health, but you use a number from 1-100 to rate your health along with an optional description of what’s going on.

If you’re interested in joining, please visit crohnology.com or you can send me your e-mail in a message and I’ll send you an invitation to join!