When thinking about ostomates who inspire us, Dana Marshall-Bernstein is at the top of our list. If you don’t know her story, you need to watch the film Semicolon; the Adventures of Ostomy Girl. She lost her battle to Crohn’s disease last December — a scary and sad reality for many battling bowel diseases, but her legacy lives on.
The award-winning 2015 documentary was produced by Dana, her mother Cari Marshall, and Director Robin Greenspun. It chronicled Dana’s life in and out of hospitals and her relationships with family, friends, and doctors, including the world-renowned colorectal surgeon, Feza Remzi, MD.
Dana was born on January 31, 1989 — a healthy baby but at age four everything changed. She started having pain, high fevers and didn’t feel well for a long time. It took doctors a while to figure out it was Crohn’s disease, an inflammatory bowel disease (IBD) that ravaged her insides. The Las Vegas native spent as much time in the hospital as she did out. Her bowel resectioned so many times, she barely had any left, requiring intravenous nutrition to keep her alive.
In 2015, she underwent a small bowel transplant — a risky surgery that Dana spent months deliberating, but it was the hope for a better quality of life that convinced her to take such a leap of faith. Unfortunately, the disease came back, torturing what was supposed to be a new and healthy bowel. “I’m just dumbfounded and a bit fearful of what this ends like. I’m asking people to keep me in their thoughts and send some positivity and good vibes this way,” she said in a Facebook post on February 10, 2017. She had the new organ surgically removed, and sadly, ensuing complications and infections ultimately took her life at just 28-years-old.
Despite the relentlessness of this illness, Dana devoted her life to helping others by advocating for awareness and fundraising for IBD research. The Marshall Family Fund and the Bernstein Family Fund have raised a combined $450,000 to support the Crohn's and Colitis Foundation and the Cleveland Clinic Digestive Disease Institute.
“The problem with having something called inflammatory bowel disease is the word 'bowel' because people don’t want to talk about that. If it’s going to take someone putting themselves out there to make that difference, I want that to be me,” she said in the film.
Ostomates can relate. There are friends who are curious about the surgery, but afraid to ask. Or friends who ignore your condition because they don’t want to talk about ostomy bags. But Dana confronts it. She is raw and vulnerable and funny. It’s easy to relate to her as you watch the film. For people with the disease, Dana will make you feel less lonely. For others, the film educates on just how horrific IBD can be. The ultimate goal is to find a cure, and until then, more funding, advocacy, and research need to be done.
Like so many, we'll miss Dana’s feisty and outspoken attitude, but she'll always be remembered as a shining star in our community.
“Dana and I want to make a difference in the lives of others, we want to help raise awareness and let others know that they are not alone... that there is hope... that we are all in this together. Never give up!” – Cari Marshall