What Happens When Ulcerative Colitis Medications Don’t Work?

After trying every option, here’s what one woman chose to do.

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Treatment for ulcerative colitis (UC) has improved greatly over time, and many people are able to reach and maintain remission. Unfortunately, for a small percentage of people with UC, the available treatments are unable to bring relief.

Chelsea Freeman was one of those people. Her UC began aggressively, and she was quickly diagnosed with pancolitis—meaning the inflammation affects the entire length of the large intestine. Learn more about how Chelsea learned her diagnosis here.

For a year after the diagnosis, she tried every available medication, but saw no improvements. At that point, many doctors will try steroids. This medication “will help get [the condition] under control often very rapidly, but it has a lot of long-term side effects,” according to Todd B. Linden, MD, gastroenterologist.

Freeman’s experience with steroids for UC was a mixed bag: “While they save your life—because they do—they suppress your immune system. They have so many side effects with them that are just grueling.” She experienced breakouts and fat deposits on her face, and the effect was so severe that her friends didn’t recognize her.

She moved on to other treatments for severe UC: biologics, infusions, and “every single drug on the market.” None worked for her.

Freeman’s doctors explained the situation to her: She could try clinical trials, or she could have a colectomy (a complete removal of the colon).

“When Chelsea first came to see me, she had severe ulcerative colitis, which was deeply affecting her quality of life,” says Sergey Khaitov, MD, a surgeon specializing in colon and rectal surgery at Mount Sinai Beth Israel. “After very extensive discussion with her, we [made the] decision to proceed with an operation.”

Freeman describes the decision as “really big and really scary.” The fact that an entire organ could be safely removed from her body was a “wild” thought. But ultimately, that’s what she decided to do.

Although surgery is a serious option, it effectively “cures” ulcerative colitis, since there is no colon left for the immune system to attack.

Want to learn more about ulcerative colitis?