What It’s Like to Be Diagnosed with Severe Ulcerative Colitis

Like many people, when Chelsea Freeman first noticed a change in her bowel habits, she didn’t think much of it. After all, everyone experiences diarrhea or stomach cramps from time to time, and it’s not hard to think of a possible culprit: too much candy, food poisoning from last night’s takeout, etc.

“In the beginning, I started to just think it was my period,” says Freeman, who has ulcerative colitis (UC). “I was seeing blood in my stool, and I would brush it off.”

But that theory could only work for so long. The period theory can only only make sense for a few days (four to seven days, to be exact), and Freeman’s symptoms were much too severe to blamed on a menstrual cycle. “One day, I looked in the toilet and it was completely red,” recalls Freeman. “I was going to the bathroom 15 to 20 times a day.”

Freeman experienced aggressive-onset UC, which is not necessarily unusual for a young adult. According to a 2011 study in Gastroenterology & Hepatology, both UC and Crohn’s disease (another type of inflammatory bowel disease) are more likely to be severe and cause complications when presenting in patients under 40—and even more so for those under 20.

Within a few months, Freeman saw a gastroenterologist (a physician who specializes in digestive disorders) and had a colonoscopy. This procedure revealed inflammation and ulcers throughout the entire colon, and the doctor diagnosed her with pancolitis—UC that affects the entire length of the large intestine. (Learn more about the types of UC here.)

According to the aforementioned 2011 study, pancolitis is associated with more symptoms, a heightened risk of needing a colectomy (surgical removal of the colon), and an increased risk of developing colon cancer. Here are other possible complications of UC.

“That was very jarring,” says Freeman about learning her diagnosis. “[UC] was never something I had even heard of before.”

While UC can be managed, and about half of patients are in remission from symptoms during any given year, Freeman’s experience was different. Even after trying “every treatment on the market,” her UC only seemed to get worse.  She was experiencing fatigue, having trouble sleeping, and dealing with anemia due to the blood loss.

“There are some people who have a more chronic issue going on. Those people have a problem where the medications just are not working for them,” says Todd B. Linden, MD, gastroenterologist. “Sometimes we say the best thing you to do is just to take the colon out completely and be done with all this.”

And that’s exactly what Freeman decided to do: an elective colectomy.

About 23 to 45 percent of people with UC eventually choose to have surgery, according to the Crohn’s and Colitis Foundation. Fortunately, for the majority of people with UC, standard treatments are sufficient to reach and maintain remission—a period of no symptoms. Learn more about treating ulcerative colitis here.