I’m not exactly sure what to call this feeling, so for a lack of a better phrase, I’m calling it “IBD survivor’s guilt.” This is not to take away from people who have lived through an actual horrific event, and have true survivor’s guilt. This is clearly not even close to being the same thing. But I think I’m probably not alone in this yet-unnamed feeling in the IBD community.
At the risk of sounding aged and out-of-touch, daily life was much different when I was diagnosed and even 10 years later when I had my j-pouch surgeries. No smart phones. No Internet. No digital photos. Most people didn’t have computers. A lot of people didn’t own cameras.
This is why there are no pictures of me. There are no photos of me battling ulcerative colitis in my hospital bed. No photos of my stoma. My wasted, 89 pound body. The skin peeling off the bottom of my feet. The blood transfusion. The voluminous amounts of gelatin I ate when my body could tolerate nothing else. There are no images of these things. We didn’t take pictures of them, and truthfully I can’t even remember if I owned a camera, or if anyone in my family did. Continue reading
Frank Garufi Jr of The Crohn’s Colitis Effect asked me a question that I actually get asked all the time, so I felt it was worthwhile to answer in writing.
“Don’t you run out of ideas to write about?’
And actually, no, I don’t. Now, that’s not to say there aren’t topics that I drag my feet on writing, or that I don’t have the resources to write at a particular time. But I never actually run out of ideas.
There are times I’m tired of writing. There are times that a particular topic is so personal that I can’t seem to get it out of my brain and into my computer. There are times when I just can’t find enough sources to write about a topic intelligently. But there are never times that I don’t actually have any ideas.
I often make a joke that when I see a study done on mice or rats my eyes glaze over and I move on. I don’t, really, of course. I read them and will watch future research to see how things pan out, and if more study moves the knowledge further and leads to anything significant.
However, I don’t usually write up a summary or include it in an article as a reference. This is because I’ve learned that most people aren’t interested in reading about mice studies.
The other reason that I don’t often report on them is because they often don’t lead to anything. The mainstream media, however, often gloms on to these stories as if they’re going to change everything for patients. But they don’t, at least, they won’t for a long time. Continue reading
Patients don’t typically get invited to medical conferences. However we are entering a new age of the “patient expert” — highly motivated patients who not only learn more about their disease for themselves, but share their knowledge with others.
In 2014, I was privileged to be invited to attend Digestive Disease Week in Chicago, and Advances in IBD in Orlando, courtesy of Janssen Biotech.
Attending a medical conference, for me, was both thrilling and terrifying, in equal measures. Continue reading
I had a recent revelation as I was planning an event for a group I volunteer with for one of my children. I am a volunteer, as so many parents are, and I spend a fair amount of time working with other parents and within the community to plan fun and educational events for our kids. But I am beginning to wonder if this is the best use of my time and if it’s providing the best experience for my children. And then it hit me – my thoughts were directly related to advocacy for chronic illness. Continue reading