Stomas, Body Image, and Mental Health

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Physical & Sexual Health
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Portrait of Julie Brown, who has struggled with being open about her ostomy

Diarrhea. Rectum. Stool. Ostomy. In a culture where adults feel shame or embarrassment about anatomy and body functions, it’s no wonder that people with colorectal cancer can internalize that shame. Especially for people with stomas and ostomy bags, this creates a negative body image, which can compromise mental health at a time when cancer triggers plenty of stress already.

Julie Brown, a stage III survivor and Fight CRC Ambassador, wants people to know what she wished she learned sooner: Being open with a community of fellow survivors can empower you to feel more positive about your body.

“When you hear you have cancer, it already has such a huge effect on your mental health. You’re thinking about so many things, potentially—about losing your life or the impact on your family. A lot of times, people don't think about how cancer affects your body image, too,” Brown says. “It’s not a cancer most people want to talk about. Not that any cancer is glamorous, but colorectal cancer involves things that are on people’s taboo list.”

“When you hear you have cancer, it already has such a huge effect on your mental health. You’re thinking about so many things, potentially—about losing your life or the impact on your family. A lot of times, people don't think about how cancer affects your body image, too.”

julie Brown

Brown says that doing the thing that most people don’t want to do—being open about what it’s like to have colorectal cancer—can be freeing. This openness changed her cancer journey and improved her mental health.

Being Young and Active with an Ostomy

Brown got a permanent ostomy in her early 30s, which compelled plenty of questions with no good answers: When do you tell someone you’re dating that you have a stoma? How do you introduce the subject to friends? How can you navigate an active lifestylehiking, swimming, going to concerts—with an ostomy bag?

For seven years, Brown didn’t mention her ostomy to others outside her closest circle of friends. She remembers the night when that changed: One evening during a conversation with other people with colorectal cancer, she heard people say that the humiliation of their ostomy was so overwhelming that they isolated themselves, and some considered suicide.

“Hearing that made me so sad because I thought, I never talked about [my ostomy] with people I don’t know. I’ve never shown it, and it’s nothing I’m open about. But I’m grateful for it! It’s given me my life back...It’s hard, and it’s an adjustment, but at the end of the day, it’s given me all these beautiful things. I talk about it openly now. I want to educate people and for people to understand that it’s not gross.”

Connecting Through Honesty and Openness

Dr. Jana Bolduan Lomax, a psychologist, wants people to understand how important it is to acknowledge and accept the full complexity of having cancer. Being honest with yourself and open with others about how you do feel—not how you should feel or how you think others want you to feel—is crucial to mental health and fostering deep relationships.

“Manage the tyranny of positive thinking. This whole popular culture idea that we really must stay strong and positive to fight our cancer, and somehow feeling sad or scared or hopeless is going to allow cancer to grow…there’s no evidence to support that positive thinking or remaining optimistic at all times leads to improved outcomes. In fact, not feeling your own emotions or not having a place to express them can be far more stressful on your body than the actual feeling of any anger, sadness, strength, or optimism,” said Dr. Bolduan Lomax.

Finding community with people who allow you to be open and fully yourself—without shame, without expectation—can create positive effects on mental health. Shame silences and isolates us; honesty and acceptance connects us.

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Owning Her Experience, Accepting Her Body -- Ostomy and All

Photo of Julie Brown in a strong arm pose

Brown decided to be more forthcoming about her ostomy, even including it in a photoshoot to show others that she had one. She says that being more upfront about her stoma and ostomy led her to be less self-conscious overall. She even feels pride in the surgery scars she used to hide. Brown regrets not achieving this acceptance earlier; she hates to think of the pregnancy photos she skipped because she didn’t want anyone to know she had an ostomy.

Brown’s honesty has led to close relationships, within the community of colorectal cancer survivors and even beyond it. Brown says that she and her now-husband began their relationship being so open—her ostomy was a discussion topic during their first date—and they’ve continued that open communication style through their marriage.

“Cancer affects every aspect of your life, so it’s an opportunity to open up and look at everything about yourself. Don’t be ashamed. [With colorectal cancer,] you already feel so self-conscious about your body, and nobody wants to admit that they need to talk to someone or that they need to see a therapist. There’s no shame. It’s good to really look at all of the things that you need, holistically and not just physically.”

More Fight CRC Resources

Please check out these additional Fight CRC resources on ostomies, body image, and mental health.