6 Unexpected Signs That Your Crohn’s Is Getting Worse

If you have Crohn’s, you’re probably all too familiar with the gastrointestinal (GI) signs of a flare. But there are other, more surprising signs that your disease is acting up, including symptoms that can affect your mouth, joints, and overall well-being.

Overall Symptoms of a Crohn’s Flare

There are general symptoms that “potentially indicate active Crohn’s disease,” says Joseph Feuerstein, MD, an attending gastroenterologist at the center for inflammatory bowel disease at Beth Israel Deaconess Medical Center and an associate professor of medicine at Harvard Medical School in Boston. These include:

• Diarrhea
• GI bleeding
• Bowel obstruction accompanied by nausea, vomiting, not passing gas, and bloating

It’s possible and common for people with Crohn’s to experience multiple symptoms at the same time. “It would be unusual, though, for any one of these symptoms on its own to be a sign of a Crohn’s flare,” says Dr. Feuerstein.

If you start to experience multiple symptoms, it may be time to see a doctor.

If you experience a loss of appetite and abdominal pain with nausea or vomiting, for example, Feuerstein says, it could be a sign of strictures, which are narrow passageways caused by thickening or scarring of the bowel walls.

A fistula, which is an abnormal connection or passage from the bowel into other tissues or organs can lead to bowel habit changes. If these symptoms are accompanied by fever, night sweats, and weight loss, it usually means the fistula is infected.

Non-GI Signs of a Crohn’s Disease Flare

Up to 40 percent of people with an inflammatory bowel disease (IBD), including Crohn’s and ulcerative colitis, experience extraintestinal manifestations (EIMs): symptoms that occur outside the GI system. The causes of EIMs are unclear, says Feuerstein, but research suggests a genetic predisposition.

No matter the reason, a review published in the August 2021 Gastroenterology considered EIMs to be a significant additional burden on those with an IBD, and they can occur with varying frequency depending on the affected organ, before or after the diagnosis of IBD. For those with Crohn’s disease, the review found that the musculoskeletal system, skin, hepatobiliary tract, and eyes were most likely to be affected.

The following are some common EIMs.

Arthritis

Inflammation of the joints is the most common EIM, affecting up to 30 percent of people with Crohn’s, according to the Crohn’s and Colitis Foundation of America. “Arthritis can affect the joints or the axial skeleton [the bones of the head and trunk],” Feuerstein explains. Different types of arthritis may flare up along with disease activity or manifest as a more chronic condition that starts with a flare but then lingers.

When arthritis develops with active disease, it typically gets better as intestinal symptoms improve. Chronic arthritis is more difficult to treat, says Feuerstein. “For immediate symptomatic relief, we always first recommend trying acetaminophen,” he says. (People with IBD should avoid nonsteroidal anti-inflammatory drugs, or NSAIDs.) Biologic medications may be recommended for severe joint pain.

Skin Changes

Skin conditions can also be a complication of Crohn’s. Erythema nodosum is an EIM that causes raised tender red and violet lumps that usually appear on the shins and can affect up to 10 percent of people with an IBD. Pyoderma gangrenosum starts as a small pustule and evolves into a large ulcer with irregular borders and a purplish edge, most often on the legs.

“These ulcers are more common with Crohn’s disease,” says Feuerstein, “but they can occur with ulcerative colitis as well.”

Liver Problems

A common and fairly minor complication of Crohn’s is fatty liver disease, which doesn’t usually cause symptoms or require treatment.

A more serious liver complication is primary sclerosing cholangitis, which causes severe inflammation, scarring, and narrowing of the bile ducts. “While this is more common among people with ulcerative colitis, it can develop with Crohn’s disease as well,” says Feuerstein. “Typically, it’s a progressive EIM and may develop into cirrhosis and cholangiocarcinoma [cancer of the bile ducts].”

Also, the risk for gallstones is higher in those with Crohn’s disease than in people without the condition, according to a systematic review published in the June 2022 issue of Cureus.

Eye Disorders

Most of the eye complications associated with IBD are both treatable and unlikely to cause vision loss, according to the Crohn’s and Colitis Foundation of America. Episcleritis, a condition that causes redness on the white of the eye, often goes away when Crohn’s symptoms begin to improve with treatment. Uveitis causes pain in the middle layer of the eye — as well as blurred vision, light sensitivity, and headaches — and may come on gradually or suddenly.

“Early recognition and treatment of uveitis is important,” says Feuerstein. If left untreated, the condition can become a medical emergency that may cause loss of vision.

Mouth Sores

Oral ulcers (canker sores) are most likely to occur during a flare and tend to subside when Crohn’s is under control. “For symptomatic relief, patients often use a lidocaine-based mouthwash,” says Feuerstein. “The lidocaine provides some numbing to alleviate the pain.”

Kidney Stones

These occur most often in Crohn’s patients with small bowel disease and those who’ve had multiple small-bowel resections, explains Feuerstein. Kidney stones usually cause sharp pain in the sides as well as nausea and vomiting.

They can be prevented by eating a low-fat and low-oxalate diet. (Oxalate is a chemical found in plant foods, per Cleveland Clinic, particularly spinach, bran, and nuts.) Feuerstein adds that it’s important to drink lots of fluids, especially ones that contain electrolytes. Treatments for kidney stones vary depending on the severity of the symptoms. Some people may need to consult a nephrologist or urologist.

Additional reporting by Zachary Smith.