Living a Full Life with a Stoma: Emily's Journey Over the Past 10 Years

"In the past decade, I got married, had a beautiful daughter who is now nine years old, and have seen my career flourish. I feel incredibly fortunate," says Emily, a 39-year-old woman who has been living with a stoma for ten years. Her cheerful tone and smile reveal no signs of hardship.

Emily is a stoma patient. Ten years ago, she underwent a colostomy due to rectal cancer, which involved removing her anus and creating a permanent stoma on her abdomen.

"I don't see the stoma as a major inconvenience," Emily shares with a smile. "I consider it a gift because it saved my life. It allowed me to find someone who loves me no matter what and blessed me with a lovely daughter."

A Misdiagnosed Condition Turns Out to Be Cancer

Emily wants to share her story to help and encourage others who are struggling with life as a stoma patient.

Ten years ago, at the age of 29, Emily was the owner of a small business and was unmarried. "I felt healthy and didn’t notice anything out of the ordinary," she recalls. The only issue was that she had been experiencing hemorrhoids, constipation, bloating, and occasional rectal bleeding for about five to six years. She always thought these symptoms were due to hemorrhoids and would simply take some over-the-counter medication when needed. She had never considered undergoing a thorough examination.

That year, her "hemorrhoids" became more severe, and the discomfort became quite noticeable. "I decided it was time to see a doctor and get a proper diagnosis and treatment," Emily says.

However, the doctor's initial assessment was troubling, suggesting that it might be a tumor. He advised Emily to go to a larger hospital immediately.

Emily's family took her to the state oncology center, where she was ultimately diagnosed with rectal cancer. "I was shocked. Who would have thought it was cancer?" Emily reflects. She had recently started dating someone, her business was thriving, and as an only child, her parents had high hopes for her future.

Facing the Reality of a Permanent Stoma

Emily’s tumor was located about five centimeters from her anus. Her father took charge of discussing the treatment options with her doctor, hoping to choose the best plan.

"My father wanted the surgery to be as thorough as possible, considering my young age, to prevent any future recurrence," Emily explains. However, she wasn’t fully aware of what the surgery entailed. "My father feared I would be overwhelmed by the idea, so I only learned the full extent after the surgery."

Her doctor explained, "For rectal cancer patients, if the tumor is too close to the anus, typically within three centimeters, removing the anus is often necessary, as sphincter-saving procedures might not be beneficial." After removing the anus, a permanent stoma is created on the abdominal wall. The bowel is brought out through an opening on the abdomen and affixed to the skin, allowing for waste to be collected in a colostomy bag attached to the stoma.

Living with a stoma means the patient has no control over bowel movements, which can be unpredictable. Initially, many patients struggle with the process of changing their ostomy bags and managing stoma care, leading to various issues like leaks or spills.

"This type of stoma is lifelong and requires regular care to avoid infections," her doctor adds. "Improper care can cause skin irritation or infection around the stoma. The physical and psychological impacts are significant. Some patients find it hard to accept their new reality."

Emily admits there was a period when she struggled to accept her situation.

Finding Support and Moving Forward

During this challenging time, Emily’s greatest source of comfort, aside from her family, was her boyfriend. "He didn’t back away after learning about my illness. Instead, he encouraged me," she recalls. That year, after her surgery, they got married. Emily had concerns about her ability to have children, but her boyfriend reassured her, saying, "If it turns out you can't have children, we can always adopt."

"I gradually learned how to care for my stoma," Emily shares. "Once I found high-quality colostomy bags, everything became more manageable." But there have been moments of inconvenience, like the time she accidentally swallowed a fruit pit that got stuck at the stoma site, causing significant pain. "Ever since then, I'm very careful when eating foods with pits," she says.

Over the years, Emily has come to terms with coexisting with her stoma. "I don’t see it as a burden. I consider it a blessing that allowed me to survive. I might be a victim of disease, but I can also be a builder of my life," she asserts.

Thriving Beyond Expectations

In the last decade, Emily has married, had a child, rejoined society, and seen her career flourish. "My daughter is nine now. She has watched me care for my stoma from a young age. She once asked, 'Mom, why are you different from other people?' I told her it was because I was greedy and ate something bad when I was younger. She didn’t find it strange and even said, 'Mom, when I grow up, I'll help you.'"

Stoma patients face many challenges, and in many ways, surgery is just the beginning. After surgery, they must quickly learn to care for their stoma and adjust their mindset to return to normal life.

Emily’s story shows us that even when faced with the challenges of a stoma, a fulfilling life is still within reach. She has faced every difficulty with optimism and courage, creating a new chapter in her life filled with love and perseverance. Every stoma patient has the potential to overcome adversity and build a life that is uniquely their own.

Please stay tuned to HEAGI as we share more real stories and stoma care knowledge.