Not counting some kinds of skin cancer, colorectal cancer is the third leading cause of cancer-related deaths in the United States. It is also the third most common cancer in men and in women, and incidences among young people (under 50) are on the rise. Thankfully, it's now part of the mainstream conversation due to efforts from advocacy groups like Colorectal Cancer Alliance, Colon Cancer Coalition, and The Colon Club. Still, many patients feel isolated and alone after their diagnosis.
When Violet Kuchar was diagnosed with stage 4 colorectal cancer at age 31, she searched for support groups but the people were not like her. “I found loads of support for patients with other types of intestinal conditions, like ulcerative colitis or Crohn’s disease, and read posts about how surgery greatly improved their lives,” she says. “They were thankful for their ostomy and could return to a somewhat normal life. I immediately felt like I did not fit in.” Then one day, someone mentioned a place she’d never heard of called Colontown.
Colontown’s mission is to help patients be their own advocates, learn about their own disease, and seek out the support they need. It exists on Facebook, but it’s not your typical online support group. This "Paltown Community" is made up of over 100 neighborhoods dedicated to specific diagnoses and patient needs. There’s the Poop Chute Group for people with colon cancer, Four Corners for stage 4 patients, Care Partner Corner for caregivers, and Stoma City for ostomates. Each one of the neighborhoods is led by someone with exactly that experience and a welcoming committee introduces each new member and connects them with the appropriate neighborhoods.
Erika Hanson Brown founded Colontown after being diagnosed with colon cancer at 58. She previously worked as a corporate recruiter and put her professional networking skills to work when she realized that not many people in her circle were comfortable talking about things related to colons, rectums, and anuses. Erika is also the Mayor of Colontown which currently has over 4,000 residents. She says some of the most active neighborhoods are Clinics — groups sorted by tumor genetic profiles, dedicated to sharing clinical trial information and opportunities. The National Institutes of Health maintains a database of all ongoing trials, but every oncologist in the country isn’t familiar with every trial available, so you can’t always count on your doctor to know or recommend one.
“When you’re diagnosed with cancer, it’s such a scary thing, and everything’s moving so quickly and so slowly at the same time,” Violet wrote on her blog. Everyone could benefit from a support group like Colontown. Thanks to Erika’s vision, now there’s a neighborhood for every person with colorectal cancer who needs support and encouragement.