My Life, My Colon and Me – Liz’s Story

A documentary following the life of an Ulcerative Colitis sufferer.

E-Patient Video Profile for Medicine X

I am extremely floored to be the profiled e-patient in this six-minute video on peer-to-peer healthcare. Larry Chu, MD, the organizer of Stanford Medicine X hired a very talented videographer (Theo Rigby) to shadow me for a day and interview me. I talked about what it has been like to live with Crohn’s Disease, and how I was inspired to build Crohnology to connect patients with it so we can find new medical discoveries.

– Sean Ahrens

How Remicade Infusion Pow-Wows Are Empowering Patients

Crohn’s and Colitis are isolating conditions. Because they are invisible illnesses, it’s impossible for a patient to walk down the street and identify another. As a result, we patients are disconnected from each other by default. To be connected to other patients, it takes conscious effort.

Friendships in real life are created by people being put into situations that allow them ample time to get to know others socially — for example, you meet someone at work, at school, or at a party.

Patients with Crohn’s & Colitis don’t have a natural setting for this sort of socialization. As a result, becoming close friends with other patients has to be a result of a created situation. It requires looking for others online or it requires setting up getting coffee with that cousin of your parent’s friend’s friend who you were told through the grapevine has Colitis. The truth is most patients don’t do it. It’s too much work, the odds that you will really connect with that person are too low, and the benefit is too amorphous.

What I’m saying is that Remicade, an intravenous medication for IBD, changes all of this. It takes disconnected and isolated patients and builds connection and empowerment [...] continue the story