How ulcerative colitis affects your body

Ulcerative colitis is a type of inflammatory bowel disease, or IBD, that causes chronic inflammation in the large intestine. This can lead to gastrointestinal (GI) symptoms ranging from abdominal pain and cramping to frequent bowel movements.

However, inflammation and associated symptoms can go beyond your gut. “Ulcerative colitis can be more systemic in the way it affects the body,” explains David T. Rubin, MD, professor of medicine and chief of gastroenterology at the University of Chicago, and chair-elect of the national scientific advisory committee for the Crohn’s and Colitis Foundation.

Find out what you should watch for, plus ways to take control of your health.

Joint pain: The most common non-GI symptom

About 30 percent of people with IBD experience joint pain, according to the Crohn’s and Colitis Foundation,¹ making it the most common non-GI symptom of the disease. Joint pain often occurs in the knees, ankles, elbows, and wrists. “It’s usually joint pain that’s symmetrical, meaning both knees or both ankles, says Dr. Rubin. “This type of joint pain tends to parallel bowel activity—so if you fix the intestine, the joint pain goes away.”

However, ulcerative colitis is also related to inflammatory joint conditions that affect your spine, like ankylosing spondylitis. “This type of joint pain can be independent of your bowel—so your bowel can be completely in remission, and your back or your pelvis is inflamed, and you can have joint damage,” says Rubin.

The good news: Some medications used to treat ulcerative colitis are also used to treat inflammatory joint conditions like ankylosing spondylitis. “It’s not that fixing the bowel makes these joints better—it’s that the medication that works on the bowel works on these joint conditions,” says Rubin. So if you’re experiencing joint pain, it’s important to work with your doctor to understand what type of joint pain you have and get proper treatment. In some cases it may be necessary to see a doctor who specializes in the joints, a rheumatologist, to work with your IBD doctor.

Conditions of the skin

The second most common non-GI symptom of ulcerative colitis is skin inflammation, which can manifest as a number of skin conditions. “The most common being an ulcerating skin problem called pyoderma gangrenosum,” says Rubin, which is often caused by injury or trauma to your skin.

“A lot of times people think they nicked themselves shaving their legs, but it doesn’t get better,” he says. “It doesn’t respond to just treating the bowel; it may need treatment that works both on the bowel and on the skin.” For difficult cases, your doctor may refer you to a dermatologist with expertise in these conditions.

Issues with your eyes

Ulcerative colitis can trigger irritation or inflammation in the eye. “When you have a red eye, or an eye that’s inflamed, that can be serious, so you need to see an ophthalmologist,” says Rubin. “It’s very treatable, but usually it’s a sign that the bowel’s inflamed, as well.” Fortunately, there are treatments available that address both the eye issue as well as the inflammation in the colon, though it’s important to catch eye issues early on to help preserve your vision.

The impact on your liver

Ulcerative colitis can also affect your liver, ranging from relatively harmless issues like fatty liver disease, to more serious conditions like primary sclerosing cholangitis (PSC). With PSC, the liver’s bile ducts become inflamed and narrowed. As a result, the liver becomes inflamed, which can cause liver damage. However, there’s no good treatment available for PSC, so people who have PSC may eventually require a liver transplant. “And people who have PSC are at an increased risk for developing colon cancer,” adds Rubin.

Work with your care team

When it comes to managing ulcerative colitis and related health risks, it’s essential to have a care team that you can rely on. “When we talk about goals for managing ulcerative colitis, in addition to making sure people achieve remission, one of the goals is to make sure that we prevent disease-related complications,” says Rubin. “So that includes knowing about all these other organ systems and making sure that any therapies people are on are being used properly and are safe and well-tolerated.”

The good news: Recent treatment advances have helped. “Some of the treatments that have come to market over the past several years treat many of these organ systems—the eyes, the skin, the joints—work extremely well, and get things under control,” says Rubin.

Even though treating PSC is more complicated, it’s still important to check in with your care team regularly if you have it. “The interesting thing about PSC, which we don’t fully understand but we’ve made some good discoveries recently, is that people who have colitis with PSC tend to have a very mild colitis,” says Rubin. “So even if your colon is doing well, it’s important to have your liver blood tests checked regularly.” If you have been diagnosed with UC and PSC, you likely will also need surveillance imaging tests for the liver and colonoscopies to make sure you are not developing complications, such as cancer, which will need to be coordinated by your care team.

And living with a chronic condition like ulcerative colitis can take a toll on your mental health, too. “It can affect the way you live; the way you function; the way you feel about yourself; the way you’re able to interact with others and have meaningful relationships,” says Rubin. “That’s why it’s so important to have a team of experts that’s working to help you.”

Medically reviewed by Matthew J. Hamilton, MD