Meet the Activist and Model Fighting the Stigma Against Crohn's
Crohn's disease causes inflammation of the bowels, and many who suffer from the condition are reluctant to speak about it openly. With her organization Uncover Ostomy, Jessica Grossman is trying to change that.
All photos by Angela McConnell
Photographed lying on her side wearing nothing but white sheets, Jessica Grossman gives a sensual stare; it's clear she's a natural in front of the camera. In another photo, she poses topless, showing off her toned abs. At first, the pictures give the impression that she's just a model during a professional photo shoot. However, something is slightly different: in each image, an ostomy pouch is attached to her abdomen.
An ostomy is a surgically created opening (also known as a stoma) formed on the body, usually on the abdomen, for the removal of bodily waste. Bodily waste passes through the stoma into a durable plastic pouch on the outside of the body that the wearer empties on a regular basis. These bags come in various sizes and can be drainable with an open-end or disposable with each use. The bag may be needed after removing part of the intestines or bladder due to cancer, injuries, or diseases involving the digestive system.
Confident and comfortable as Grossman is with her body, that wasn't always the case. At age nine, she was diagnosed with Crohn's disease, a chronic inflammatory condition of the gastrointestinal tract. For those with Crohn's, there is no cure. However, many people can go through periods of remission and feel no symptoms. Other times, they may experience flare-ups in which complications can include bowel obstructions, anal bleeding, malnutrition, ulcers and colon cancer.
From the ages of 11 to 13, Grossman's days were spent in and out of the hospital as she was put through various different medications and many unsavory diets—including one that consisted of nothing but Ensure nutritional milk. She gained weight from the steroids she was taking, missed several days of school and had barely any friends. After she had spent years enduring painful tests and bleeding bowels, a surgeon she consulted came in and gave her an ultimatum. He told her that the doctors had done all they could to alleviate her pain. The last resort was for her to get her colon removed and wear an ostomy bag. Or, she could end up dying as her condition worsened.
The surgeon, a family friend, explained that his wife has an ostomy and led an active lifestyle. Knowing that made it easier for Grossman to accept. When she finally got her surgery done, she adjusted well to the change. "I hadn't done anything in two years," she says. "I had no friends, I wasn't eating, I was sleeping all the time, and I was in so much pain. It was the only thing to do."
Now almost 13 years later, the 26-year-old considers her ostomy bag like another limb and leads a busy life. She works out, wears whatever she wants—with the exception of silk and low-rise jeans—and is prepping for her marriage next August. With two university degrees, she now also heads her own digital marketing agency and balances gigs as an actress and model. In addition, she's the founder of a website called Uncover Ostomy, where she blogs about her experiences, teaching fellow ostomates and the general public that life with a chronic illness such as Crohn's is manageable.
It's not something people want to talk about very much.
Having an ostomy doesn't stop one from physical activity like playing sports or having sex, says Dr. Nancy Baxter, a colorectal surgeon at St. Michael's Hospital in Toronto. But since it involves bowel movement, she notes that people are often terrified of surgery or turned off from discussing it. "It's not something people want to talk about very much. But, the good news is that people do exceptionally well after having a stoma and it can dramatically improve people's quality of life."
Brittany Ferreira, who underwent ostomy surgery earlier in December, was originally hesitant about the procedure when she was diagnosed with Crohn's at 15. Given the choice of an ostomy or a drug called Remicade, she opted for the latter out of fear and lack of knowledge of the disease. "Of course at 15, you're like, 'Oh my God, I don't want to wear a bag!'" she says. "I was so completely unprepared."
But as the medication began to fail on her body and pre-cancerous cells were found in her colon, Ferreira chose the ostomy. Now post-surgery, she says she doesn't feel as much pain as she felt before and is looking forward to going out more. "Things like going to the beach or going to the mall—these big, public places I would absolutely not go. I wouldn't because it's just a nightmare trying to navigate to a bathroom every minute," she says. "But now, I'm just thinking of all the things I want to do once I'm fully recovered."
Grossman owes her ostomy for saving her life, but she says it isn't always easy to get people to open up about their own. In order to break the silence and shame of having a bag attached to one's body, Grossman says people need to change the way they talk about it. When she started Uncover Ostomy, helmed from a project during a high school media class, she received some negative reactions from the ostomy community because they thought her photos were embarrassing. "I was appalled. People with ostomies were so unhappy about me coming out and talking about it."
Six years after starting her website, she says she's noticing that fellow ostomates are getting more comfortable with their bodies. During World Ostomy Day in October, she helped head the #MyOstomyStory social media campaign, in which people were encouraged to share their own experiences. Many were even inspired to take their own pictures showing off their pouches.
For Grossman, that's progress. She stresses that any one going through what she did as a child should see the ostomy as an option. "I know that there are a lot of people out there who would rather struggle through the pain and not have a life and/or die than have ostomy surgery because they think it's the worst thing in the world," she says, reflecting on how the procedure's changed her well-being. "I am living the best life that I can possibly live."