Inflammatory bowel disease: problems outside the gut
The extra-intestinal manifestations of IBD can be a clue towards a diagnosis or an adjustment of the treatment.
Inflammatory bowel disease (IBD) is a type of chronic inflammation of the gastrointestinal tract. Ulcerative colitis, characterized by ongoing inflammation of the large intestine, and Crohn’s disease, which causes patches of inflammation and can occur anywhere in the gastrointestinal tract, are two types of IBD. Patients with IBD may experience a variety of gastrointestinal symptoms such as abdominal pain, diarrhea, blood in the stool, bloating, and weight loss.
What conditions can occur outside of the gastrointestinal tract in people with IBD?
Symptoms of IBD can occur both inside and outside of the gastrointestinal tract. These are known as the extra-intestinal manifestations (EIM) of IBD. These conditions occur in nearly half of all people with IBD and may be present before and/or after a person is diagnosed with IBD. ADRs are more common in people who are diagnosed at an earlier age and usually occur earlier in IBD. In fact, about 24% of IBD symptoms are present before you are diagnosed with IBD. The causes of ADRs are poorly understood but, like IBD, they can be due to a combination of genetic risk factors, immune reactions, and lifestyle factors such as smoking.
What are some examples of extra-intestinal manifestations of IBD?
Patients may have multiple ADRs at the same time, with varying severity. ADRs may not be easy to detect and almost any organ system can be affected. Sometimes the severity of ADR symptoms mirrors that of bowel symptoms, but in some conditions ADRs behave independently. Here are some common examples of extraintestinal manifestations.
Musculoskeletal: Musculoskeletal manifestations of IBD are the most common, occurring in up to 46% of patients with IBD. They can present as inflammatory back pain (ankylosing spondylitis), inflamed tendons or ligaments, arthritis, joint pain without arthritis, or swelling of the fingers or toes (dactylitis). Arthritis can occur both in the axial (hips, lower back, spine) or peripheral (fingers, wrists, elbows, knees, ankles) skeleton.
Mucocutaneous: IBD can cause changes in the skin and mucous membranes (the moist membrane that covers certain organs and body cavities). Mouth aphthous ulcers (seen with Crohn’s disease), erythema nodosum (raised purple nodules usually on the front of the legs, which may occur in 10% to 15% of patients) and pyoderma gangrenosum (painful skin ulcers) are some examples of how IBD can impact the skin. Sweet’s syndrome, which involves tender lumps under the skin and is also associated with increased white blood cell count, fever, arthritis, and eye symptoms, is a rare ADR.
Ocular: Inflammation of certain parts of the eye (episcleritis, scleritis or anterior uveitis) affects 2-7% of patients with IBD. If patients experience eye pain, redness, tenderness or visual changes, urgent evaluation by an ophthalmologist may be required, due to the risk of blindness due to uncontrolled inflammation.
Vascular: Patients with IBD are up to three times more likely to develop blood clots than patients without IBD. Sometimes these clots can travel to the lungs and are called pulmonary emboli. Symptoms of blood clots can be swelling in the legs or shortness of breath. Poorly controlled inflammation in the gastrointestinal tract is thought to be the cause of an increased risk of clotting.
Gastrointestinal: Although not common, patients can develop IBD-related liver diseases, including primary sclerosis cholangitis (inflammation and scarring of the bile ducts) and autoimmune hepatitis (when the immune system attacks cells of the liver, causing inflammation of the liver). Autoimmune pancreatitis has also been reported. These conditions can be diagnosed by symptoms, blood tests, or imaging results (sometimes using MRI).
How are ADRs treated?
It is important to treat intestinal inflammation effectively, as this can reduce the activity of extraintestinal manifestations. Sometimes ADRs may require additional specific treatments. For example, corticosteroids, sulfasalazine (an anti-inflammatory drug) or specific biological therapies may be considered for the treatment of arthritis. Cutaneous and ocular manifestations of IBD can be treated with topical or systemic corticosteroids, immunosuppressants or specific biological therapies. Vascular manifestations such as blood clots can be treated with anticoagulant drugs. Treatment of ADRs is complex and often requires a collaborative approach to care with multiple healthcare providers.
What should I do if I experience symptoms?
Recognizing ADRs is important because they can significantly affect your quality of life and can also impact your doctors’ approach to IBD treatment and monitoring over time.
Whether or not you have been diagnosed with IBD, it is important to consult your primary care physician or gastroenterologist (if you have one) to discuss any symptoms you may be experiencing. Your doctor(s) will discuss your medical and family history to determine your risk for IBD or other medical conditions.
For patients with a diagnosis of IBD or at risk for IBD, ADRs may be the first clue to the diagnosis or the need for investigation and treatment adjustment. It is important to communicate your gastrointestinal and non-gastrointestinal symptoms to your gastroenterologist in order to quickly begin the appropriate treatment and to be connected with specialists in the affected organ system. Lifestyle changes such as quitting smoking can also reduce the risk of EIDs.
With targeted treatment and the appropriate healthcare team in place, management of IBD and EIDs can be achieved to improve patients’ quality of life.