What Is It Like to Manage Ulcerative Colitis? How I Stay Active With the Right Treatment
Key takeaways:
Kaleigh Canfield spent 3 years having symptoms before being diagnosed with ulcerative colitis.
Targeted biologic therapy has helped her control flare-ups by reducing inflammation.
Today, Kaleigh is back at work and enjoying her favorite hobbies again.
When Kaleigh Canfield isn’t working, she’s training and competing in what’s known in the equestrian world as reined cow horse events. These competitions test the precision and stamina of the horse and rider with skills inspired by traditional ranch work.
Unfortunately, in 2023, a severe ulcerative colitis flare-up disrupted Kaleigh’s ability to participate in the events, sidelining her for the show season, and every other facet of her life. Here’s how she got her flare-ups under control and regained her active lifestyle.
Understanding ulcerative colitis
Ulcerative colitis (UC) is a condition that causes inflammation in the colon and rectum. It can lead to symptoms such as stomach pain and extreme tiredness. It also can result in frequent bathroom trips that can interrupt daily life.
Kaleigh, who’s 34 and lives in Lempster, New Hampshire, works as a molecular biology research associate. In the past, the unpredictability of her UC flare-ups often controlled her daily schedule.
Kaleigh planned driving routes around bathroom stops. And she sometimes avoided competing in reigned cow horse events because she worried about getting out of her riding chaps in time. At her worst, UC left her too exhausted to shop for groceries or care for her animals, which include dogs, pigs, emus, and a parrot.
In 2023, she experienced a particularly debilitating flare-up. “I was couch-bound for 4 to 5 months,” Kaleigh says. “My GI doctor was on maternity leave, so that prolonged everything. But that [flare-up] is what led me to go on biologics.”
That June, Kaleigh began treatment with Entyvio (vedolizumab), a biologic medication. Entyvio works by targeting immune cells in the gut, reducing inflammation, and helping to control UC symptoms such as diarrhea and abdominal pain.
Kaleigh says the medication has been life-changing, allowing her to feel almost normal again.
Food trial and errors and getting a diagnosis
Kaleigh’s symptoms began in her late 20s. But it took nearly 3 years to receive a diagnosis.
Some of the first symptoms she noticed were cramping and nausea after eating. She tried different diets to try to figure out which foods were triggering those symptoms.
To her surprise, she discovered foods with gluten, fried items, and dairy products didn’t bother her, she says. But tomatoes and anything with vinegar in it caused issues. She also had problems digesting foods high in fiber and some meats. That left her with few options beyond carbs and sugar — the very foods most of what she read advised avoiding.
What are biologics, and how do they work? Biologic medications are targeted therapies that treat specific parts of the immune system. Here’s an explainer.
What is Entyvio (vedotizumab), and how does it treat ulcerative colitis? Entyvio is a biologic medication that targets immune cells in the gut, reducing inflammation.
How do health savings accounts (HSAs) work? You can contribute to one of these tax-advantaged accounts if you are enrolled in a high-deductible health plan. Here’s how HSAs work.
Kaleigh remembers constantly worrying about what she was going to eat. “I was getting a lot of cramping and pain. It wasn’t fun to do anything,” she says. “I was worried to eat. And if I did eat, [I worried,] was I going to have cramps?”
It took years of testing to diagnose her UC. Now, though, she says she can enjoy most foods as long as she eats in moderation. She still worries about how her stomach will react, but she now takes anxiety medication that helps with that.
Navigating insurance challenges
Even with the good health insurance she has through her job, getting affordable care hasn’t always been easy for Kaleigh. For a while, every test and medication, including Entyvio, needed special approval.
Kaleigh’s doctor first recommended the pill version of Entyvio, but her insurance denied her coverage for it because it was a newer medication. “We fought for that for a while, and then finally got the approval for [the IV version],” she says.
She also faced issues with an expensive antibiotic. “The approval was only good for 10 days,” Kaleigh says. “By the time it came in the mail, it had already expired.”
Kaleigh credits her care team at Dartmouth Hitchcock Medical Center with helping her navigate those hurdles. They assisted her with renewals and set up a payment plan to help her manage costs.
“I’m on a high-deductible plan and usually hit my deductible within the first week or two,” Kaleigh explains. “And then, everything else gets covered as long as it’s approved.”
She now puts money in a health savings account (HSA) to cover her prescription medications and spreads out deductible payments over the year. Those strategies help her budget and stay on top of expenses.
Finding treatment and support to regain an active lifestyle
After starting treatment with Entyvio, Kaleigh has had fewer flare-ups. She opted to stick with IV infusions every 6 weeks, even though a self-administered injection became available in 2023.
At first, she wasn’t thrilled about spending so much time in the hospital, Kaleigh says. But now, she looks forward to the IV infusions, because they give her a chance to take a break.
“They bring you warm blankets and snacks the whole time, and I don’t want to give that up,” she says. “It is kind of a nice way to block off time.”
Building back her strength after months of inactivity has been hard, but Kaleigh has returned to her daily routine.
“There are days I know I need a rest day, or I know I need a day for me,” she says. “Minimizing movement always helps. You just have to accept that life. And if you need a day on the couch — even if it’s in the middle of something important — you just have to take it, because it’ll make you feel better in the long run.”
Much of the progress she’s made is thanks to her GI doctor, Kaleigh says. “Her sense of optimism has been really motivating,” she says, explaining that her doctor was confident she could get Kaleigh back to completely normal.
With the right treatment and support, Kaleigh has reclaimed her active lifestyle. She’s now back in the arena, doing what she loves most.
Why trust our experts?
