Crohn’s and Colitis Foundation: How Advocacy Brightened One Woman’s Journey

Approximately 1.6 million people are affected by Crohn’s disease and ulcerative colitis in the United States.

These two conditions are collectively known as inflammatory bowel disease (IBD). Crohn’s affects everyone differently, but its main characteristic is the inflammation of one’s gastrointestinal tract. Ulcerative colitis differs in that it is only in the large intestine (colon).

Even though a significant amount of the population is affected, the spectrum of how symptoms affect each individual varies widely. Because of this, not everyone chooses to talk about what they are experiencing. The Crohn’s and Colitis Foundation is working tirelessly to change that mindset and spread awareness for the disease.

Pushing toward a cure; providing hope

The foundation was started 51 years ago with the intention of finding a cure for both Crohn’s and ulcerative colitis. As a non-profit, they are primarily focused on fundraising and research – but that’s not their only goal. Melissa Greer, Executive Director of the Michigan chapter, spoke on how the foundation works to help those affected by the disease in other ways.

“This is not just a lip-service organization. It’s one of the best-run companies I’ve ever seen that is on the cutting edge of a cure with groundbreaking research,” Greer said. “But we also want to support and provide a sense of community for patients and caregivers. Educating those that are affected on how to manage the condition is just as important. Until we find a cure, this is what we want to concentrate on.”

“It’s a constant battle …”

Lindsey Russell is one survivor that found a sense of community within the foundation.

She was only seven years old when she first started showing signs of her Crohn’s disease. Her family thought it was just the flu, but over time, her condition increased in severity. By the time she was 15, her bouts of bleeding were so frequent that she thought it was normal to bleed from the rectum. That same year, she received her first major surgery, a bowel resection, which removed part of her small intestine. After that procedure, she never truly bounced back.

In the subsequent years to follow, Russell underwent many surgeries, was prescribed nearly every IBD medication, had constant hospital visits and ultimately needed a colostomy bag. Then, in 2015, Russell was given the option to have the bag reversed.

“Not many people are given that option but I know that if I hadn’t done the reversal, I would’ve always wondered what would have happened if I did,” admitted Russell.

Her doctors believed her colon had repaired itself enough for the bag to be removed. Three years later, however, her body is still recovering and adjusting from the removal.

“It’s a constant battle between you and your head on whether you can make it through the day. You can feel fine one day and the next you can’t move,” Russell added.

Comfort in advocacy

Throughout the battle with her disease, she found comfort in advocacy. She started by participating in walks with the Crohn’s and Colitis Foundation and transitioned to volunteering at events. It was at an advocacy walk that she met Greer.

“I was at the Grand Rapids walk and fearlessly introduced myself to her,” Russell remembered. “From there, I got to know Melissa as someone who had made a true commitment to people like me with this disease and you don’t find many people who do that.”

two women at award ceremony
Melissa Greer (left) and Lindsey Russell (right) at the CCFA ceremony, where Russell won Patient of the Year.

The foundation gave Russell a platform to share her story. She won Patient of the Year at the Crohn’s and Colitis Foundation Awards and shared her journey in a room full of professionals, from doctors and nurses to IBD therapists and nutritionists. Her advocacy work didn’t stop with the foundation, either; she was inspired to start her own support group page on Facebook, titled “A Semi Colon Life.” With everything that she has gone through, her drive to help others has never quit. Though Lindsey’s medical journey isn’t over, the fight for a cure will continue moving forward.

To learn more about the Crohn’s and Colitis Foundation, check out their website, Michigan Chapter page, and Facebook page. Get involved by attending one of their upcoming events.

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Photos courtesy of Lindsey Russell

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