Learning to live with ulcerative colitis was uncharted territory for Winter.
“Ulcerative colitis is a game changer. It impacts your quality of life in ways you really cannot prepare for,” she said. “You need to monitor so many things, including what you eat, your fatigue, when you’re not feeling well and frequency in the bathroom,” she said.
Beyond managing the symptoms, Winter often struggled with sharing her diagnosis and pain with those around her, saying “you don’t want to be treated as different - you don’t want to be treated as diseased.”
Winter acknowledged that “for many of us, we’re warriors in a sense, because we’re just powering through.”
The turning point
Although Winter managed the disease as best as she could, in 2014, a flare up left her hospitalized.
Winter remembered feeling like she hit rock bottom when she was notified by her physicians that if they could not get her ulcerative colitis under control, she would die.
“I was 31 at the time, four children, married, living the dream,” she said. “What do you mean I’m going to die? What do you mean you can’t get it under control?”
This was a major turning point for Winter. She realized that she had to figure out how to work through the challenges that ulcerative colitis brought into her life and fight for the life she always envisioned having with her husband and children.
A long road to recovery was ahead of her, but Winter knew that she had to be brave and take control. “I may have this ulcerative colitis diagnosis, but it does not have me,” she said.
Winter is hopeful that new treatment options for people suffering from immune-mediated diseases will continue to be made available, and she expressed appreciation for the scientists who are looking for solutions that could transform her life.
“Researchers — and the work they do — matter more than they know. They need to continue to push the envelope on every option possible to set us free from these diseases.”
Becoming an advocate
The experiences of the past 20 years led Winter to become an advocate, with the goal of bringing awareness to the disease and removing stigma.
By sharing her story, Winter hopes to inspire others to also get help and not ignore their symptoms.
While there are constant ups and downs with the diagnosis, Winter is quick to add, “it does not have to be something that ruins your hope and dreams. You can still move forward and achieve whatever you want.”
She is living proof of that.