Category Archives: travel

There Are No Pictures Of Me

Amber as a baby

Aww. I’m a baby. Why am I holding a football? No idea. This would have been mid-70s, as evidenced by the green velour couch. It was a super comfortable couch, let me tell you. Great for building forts, too.

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

What’s It Like To Go To A Medical Conference?

Digestive Disease Week 2014

Members of the IBD Social Circle, Janssen Biotech, Tonic Life Communications, and gastroenterologists meeting at Digestive Disease Week 2014. I’m in the first row, fourth from the right. Everyone in this photo is an amazing IBD advocate, and I am privileged to have met them and worked with them.

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

To The Woman Employing The Courtesy Flush In The Next Stall

Women's Bathroom

I do enjoy a good bathroom. This fun women’s room entry is found at the M&M store in New York. (I also enjoy a good M&M. Or any M&M, really.)

I was using the so-called “courtesy flush” long before I knew it had a name. Flushing something particularly odorous quickly or flushing to mask the sound of flatulence are common reasons for the courtesy flush. You might use this tactic at a friend’s house or even at home, but most often it’s used in public bathrooms, especially those that are not well-trafficked.

Anyone who has inflammatory bowel disease (IBD) has used the courtesy flush. Maybe there are some who couldn’t care less what the person in the next stall hears or smells, but others feel some embarrassment.

Continue reading