When thinking about ostomates who inspire us, Dana Marshall-Bernstein is at the top of the list. If you don’t know her story, you need to watch the documentary Semicolon; the Adventures of Ostomy Girl. She lost her battle to Crohn’s in December—a scary and sad reality for many battling bowel disease, but her legacy lives on.
The award-winning 2015 film was produced by Dana, her mother Cari Marshall and Director Robin Greenspun. The film chronicled Dana’s life in and out of hospitals and her relationships with family, friends and doctors, including world-renowned colorectal surgeon, Feza Remzi, MD.
Dana was born January 31, 1989 a healthy baby, but at 4-years-old everything changed. She started having high fevers, pain and didn’t feel well for a long time. It took doctors a while to figure out it was Crohn’s, an Inflammatory Bowel Disease 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 says in the film.
Ostomates can relate. There’s the friends who are curious about your stoma, 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. We will 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