Ulcerative colitis affects your colon, so the main symptoms include stomach pain, diarrhea, and other issues in your gut. But the disease can also affect other parts of your body, such as your joints, skin, and eyes.
As many as 45% of people with ulcerative colitis have at least one of these "extra-intestinal" symptoms, as they’re called by doctors. They may appear long before you have ulcerative colitis or show up years after your diagnosis.
What causes them? Sometimes, these symptoms are the result of ulcerative colitis flares. In other cases, the genes that lead to ulcerative colitis may raise the risk for other autoimmune conditions, says Raymond K. Cross, MD, the medical director of The Center for Inflammatory Bowel and Colorectal Diseases at the University of Maryland, Baltimore.
Many of these issues get better when you treat ulcerative colitis. By controlling the inflammation that causes flares, you’ll reduce inflammation throughout the rest of the body, too. For some conditions, you may need to see a specific doctor and get treatment. “Always talk to your doctor about any new symptoms that you have,” Cross says. Some symptoms, such those affecting the eye, are serious and may lead to permanent damage.
Ulcerative colitis can cause symptoms throughout your body. Here are some of the most common ones and how they’re treated.
Weight Loss
About half of people with ulcerative colitis lose a significant amount of weight before their diagnosis. During a flare, frequent diarrhea can prevent your body from absorbing nutrients. It can also dampen your appetite, so you don’t eat as much. Chronic inflammation can also set the stage for weight loss.
“When my disease was active, eating meant I’d have to go to the bathroom more often and have stabbing pain,” says Liz McCarthy, an ulcerative colitis patient who started a support group at Torrance Memorial Medical Center in California. “It got so bad that I barely ate. I just drank broth instead.” By the time her disease was stable, McCarthy had lost 50 pounds.
How it’s treated: Getting your ulcerative flares under control can help, says Andrew Dupont, MD, professor of gastroenterology, hepatology, and nutrition at McGovern Medical School at UTHealth Houston. You’ll work with a gastroenterologist to lower inflammation and ease symptoms, such as diarrhea and stomach pain. You’ll also see a dietitian, who can identify foods that worsen flares and prescribe a diet that prevents unwanted weight loss.
Joint Pain
The most common non-digestive symptom is joint pain. The inflammation from ulcerative colitis flares can affect your joints and cause pain, stiffness, and swelling. These joints include those in the arms and legs (peripheral arthritis) and lower spine and bottom of the back (axial arthritis). In rare cases, people with ulcerative colitis can have a serious case of spinal arthritis called ankylosing spondylitis. “It’s important to tell your doctor about any joint pain,” Dupont says. You’ll want to get the inflammation in check to prevent any permanent damage to the joints.
How it’s treated: “Many times, when the colitis is under control, the joint pain goes away,” Dupont says. Avoid taking aspirin, ibuprofen, and other NSAIDs without talking to your doctor first, he adds. These drugs may irritate the lining of the colon and make things worse. Depending on your symptoms, you may see a rheumatologist. Some drugs, such as some JAK inhibitors and biologics, can treat both arthritis and ulcerative colitis. Resting the joint, applying moist heat, or seeing a physical therapist for range-of-motion exercises can also ease the pain.
Fatigue
Feeling so wiped out that you can’t keep up with your daily life? It’s a main symptom of ulcerative colitis. There are various reasons why the disease can cause fatigue, Cross says. A flare can prevent you from eating or absorbing important nutrients for energy, such as vitamin B12 and iron, he says. “Because eating caused so many symptoms, I barely ate,” says McCarthy, the ulcerative colitis patient in Torrance. “I definitely wasn’t getting enough nutrition. I felt exhausted all the time.”
Chronic inflammation can also leave you feeling drained. And people with ulcerative colitis are more likely to have poor sleep or depression, both of which go hand-in-hand with fatigue.
How it’s treated: First, your doctor needs to determine the underlying cause. You'll likely be tested for several things including vitamins and minerals such as vitamin B12 and iron. If you’re low in a certain nutrient, you’ll take an over-the-counter or prescription supplement. You’ll also get screened for depression and sleep issues. These treatments may include antidepressant medications and lifestyle changes, such as regular exercise.
Skin Problems
From rashes to canker sores, ulcerative colitis is linked with a long list of skin issues. Some of the most common include erythema nodosum, painful red bumps that appear on the shins, ankles, and sometimes the arms. You might also develop rashes, blisters, or painful skin bumps.
People with ulcerative colitis are also more likely to develop certain immune-related skin diseases. These include psoriasis (scaly, itchy skin), vitiligo (white or light patches on the skin), eczema (dry, itchy skin), and rosacea (red and sometimes blistered skin, often on the face). For Clemmie Oliver, an ulcerative colitis patient and inflammatory bowel disease specialist in London, eczema came first in childhood. She later developed eczema and rosacea as an adult. Oliver didn’t realize there was a connection between her skin and ulcerative colitis until one of her doctors mentioned it. “I’ve noticed that my skin flares up through periods of stress, which triggers UC flares, too,” she says.
Ulcerative colitis medications can also affect the skin. For example, taking steroids for a long stretch of time can result in stretch marks, acne, and puffiness, while a possible side effect of anti-TNF agents is a rash. Certain symptoms, such as diarrhea, can aggravate the skin around the anus, causing small tears called fissures.
How it’s treated: Your doctor may refer you to a dermatologist, who specializes in skin conditions, for treatment and medication. Oliver says she controls her skin issues with medications for her ulcerative colitis and prescription creams for rosacea. She also manages her stress, diet, and sleep to keep flares to a minimum.
Anxiety and Depression
Dealing with ulcerative colitis isn’t easy. The pain and sudden urges to use the bathroom can take a toll on your mental health. “It’s socially isolating,” says Catherine Kerschen, DO, associate professor of medicine at Michigan State University College of Osteopathic Medicine. What’s more, research finds a connection between gut health and the brain, suggesting that your gut health can play a role in your mood and mental well-being.
How it’s treated: Your doctor may prescribe therapy or medication to treat anxiety or depression. Lifestyle changes, such as regular physical activity and getting enough sleep, can also improve your mental health.
Eye Issues
The inflammation from flares can cause eye problems. These include uveitis, inflammation of the middle layer of the eye, and episcleritis, inflammation in the outer layer of the white area of your eyes. “If you have any changes in your vision or see flashing lights, you should see your doctor right away,” Dupont says. If left untreated, these conditions may cause vision loss.
You may also have dry eyes, a condition where you don’t have enough liquid tears. Ulcerative colitis can keep you from getting enough vitamin A, which your body uses to make tears.
In some cases, the steroids used to treat the disease can raise your risk for eye problems, like glaucoma and cataracts.
How it’s treated: Your doctor or an ophthalmologist may prescribe eye drops to control the inflammation. Other treatments may include eye injections or, in serious cases, surgery.
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