What It’s Really Like to Live with Ulcerative Colitis

Managing symptoms and treatments is a lifelong struggle for patients. 

While some brides-to-be spend the week before their big day worrying about the weather or fitting into their dress, Danielle Kroft was dealing with a flare-up of her ulcerative colitis (UC). And a wedding dress wasn’t exactly going to make the situation easier.

“I couldn’t imagine being stuck in that dress for nine hours,” Kroft recalled. “So I was in my doctor’s office begging him to give me anything and everything to get it under control.”

This is what life is like for more than 900,000 people in the United States living with UC, an unpredictable inflammatory bowel disease (IBD) with symptoms that come and go over time. Some patients go years without symptoms; others have frequent flare-ups. In a survey, almost two-thirds of patients feel like UC controls their lives.

While more people are being diagnosed with IBD, Kroft believes that there is hope to accepting and managing the chronic disease. She has been reluctant to talk about her UC but is sharing her story for this year’s World IBD Day (May 19) to raise awareness so others can learn to better manage their disease.

A WEEK BEFORE HER WEDDING DAY, DANIELLE KROFT HAD A FLARE-UP OF HER ULCERATIVE COLITIS THAT THREATENED HER PLANS. PHOTO CREDIT: TARA WILEY PHOTOGRAPHY

A WEEK BEFORE HER WEDDING DAY, DANIELLE KROFT HAD A FLARE-UP OF HER ULCERATIVE COLITIS THAT THREATENED HER PLANS. PHOTO CREDIT: TARA WILEY PHOTOGRAPHY

Dinner Table Conversation Non-starters

When Kroft began noticing blood in her stool and experiencing abdominal pain at the age of 14, she didn’t tell anyone at first, thinking—or maybe hoping—that it would go away on its own. After all, the symptoms are hardly appropriate for the dinner table. But as the symptoms continued, Kroft eventually confided in her mother, who scheduled a doctor’s appointment. Five months, multiple doctor visits and a colonoscopy later, she was diagnosed.

“When you are 14, you don’t know what symptoms you should be watching for,” Kroft said. “Part of the reason that it took so many months to be diagnosed with UC was that I wasn’t sharing all the information about my symptoms with my doctors.”

This experience is common; in a survey, 45 percent of patients with UC regret not sharing more information with their doctors during visits. UC is most frequently diagnosed between the ages of 15 and 30, when patients may feel self-conscious talking about symptoms such as bloody stools, diarrhea and urgent needs to use the toilet.

When Kroft’s sister was diagnosed a couple of years later—genetic factors are thought to play a role in the disease—Kroft felt like she had someone close to her who could relate. But she also learned first-hand that no two people with UC have the same experience.

“Our food triggers, for example, are very different,” Kroft said. “I can eat bananas, but they upset her abdomen. I don’t do well with pancakes, but for her, pancakes aren’t a problem. And I really like pancakes.”

When you have a chronic illness, you need to take your medicine and build in time for blood work and doctor visits.

Things Only Got Harder

Being diagnosed with UC was just the start of Kroft’s lifelong struggle to control the disease, which is the best that she can hope for with no current cure. Instead of worrying about what shoes she was going to wear to school, Kroft had to focus on taking her medication every day or risk getting sick.

Sticking with her treatment plan was not easy. At one point, she was taking 26 pills a day—a mix of over-the-counter and prescription medications and supplements. UC treatment remains a trial-and-error process, and her first few medications didn’t work out. Her treatment plans have included enemas and foams that had to be administered rectally, which she recalls was as uncomfortable as it was embarrassing.

Things only got harder in college. Waking up at 4 a.m. each day for crew practice and the logistics of taking her medications stressed her out. “Where are you going to lay down to take an enema when you’re living in a dorm? Ask your roommate to leave because you have to do that? No way.”

At one point during her sophomore year, she had a month without any symptoms and convinced herself that she didn’t need her medication anymore. She stopped her treatment, which led to a really bad flare-up.

“I broke down emotionally at that point,” Kroft said. “I was young and didn’t take it as seriously as I should have. I didn’t make it a priority.”

AFTER TEN YEARS OF TRYING DIFFERENT THERAPIES, KROFT AND HER DOCTOR FINALLY FOUND A TREATMENT PLAN THAT HELPS HER MANAGE HER UC SYMPTOMS.

AFTER TEN YEARS OF TRYING DIFFERENT THERAPIES, KROFT AND HER DOCTOR FINALLY FOUND A TREATMENT PLAN THAT HELPS HER MANAGE HER UC SYMPTOMS.

Talking Poop

About ten years, multiple medications later, Kroft has finally found a treatment plan that works for her. She also landed a job she loves in public relations and married her high school sweetheart.

She still feels the need to be close to a bathroom during conference calls or while commuting. And she understands that’s always going to be a part of her life. For the most part, she’s feeling well.

“The biggest thing I have realized is that you need to take care of yourself,” Kroft said. “When you have a chronic illness, you need to take your medicine and build in time for blood work and doctor visits.”

Taking good care of yourself means learning more about your chronic disease and getting support, according to Kroft. She wishes she had asked her doctor more questions about the condition and had spent time reading the Crohn’s & Colitis Foundation’s website when she was first diagnosed. Recently, Kroft has begun attending seminars from the Foundation, where she has learned from other patients and experts. She’s presently most concerned with learning the effects, if any, of UC and its treatments on pregnancy.

Over the past 14 years, Kroft has also learned to be more open with people about her disease. She can’t believe she waited six years before thoroughly explaining what living with UC is like to her now-husband. “People are a lot more willing to talk about poop issues and cut you some slack than you might think,” Kroft said.

To learn how combining endoscopic and microscopic analyses is providing a more complete picture of UC, read “A Closer Look at Mucosal Healing in Ulcerative Colitis.”