During a clinic appointment, it’s pretty standard to share how our gut is feeling and symptoms that you may be experiencing. But, have you ever thought about sharing other changes you’ve noticed with your body?  Changes outside of your gut? If not, it’s something worth considering.

You may have heard your gastroenterologist or IBD nurse mention the term extraintestinal manifestation (extra-intestinal-manifestation) or EIM. EIMs are conditions that affect different parts of the body, outside of the gut, and may be related to your IBD inflammation. The exact cause of EIMs is not completely understood, so more research is needed. EIMs commonly affect the skin, eyes, mouth or joints. Individuals with IBD can experience an EIM prior to their diagnosis, and it’s also possible to develop an EIM while in remission.

EIMs can be quite common among pediatric IBD patients. Research has shown that 50% of patients with UC and 80% with Crohn’s will develop at least one EIM at some point in living with the disease[1]

Areas most commonly affected by EIMs:

  • Joints
  • Skin
  • Eyes
  • Mouth
  • Bones
  • Anemia

Joint inflammation or arthritis, pronounced arth-ri-tis, is a common EIM of IBD and typically affects large joints like elbows, wrists, knees and ankles. Arthritis can cause pain, aching, stiffness and swelling in and around the joint(s).[2] Some patients can develop pain and swelling in small joints like the hands, fingers and feet, and others may experience arthritis in their hips or back.  Most arthritis symptoms improve once gut inflammation is under control. Some IBD therapies are also used to treat arthritic conditions, which provides added management of symptoms for IBD patients affected by both conditions.

Erythema nodosum (EN), pronounced era-theema no-dough-sum, is a common condition that affects the fat under the skin. EN appears as tender, red bumps often on the ankles, upper or lower legs, or forearms. The condition is harmless but can be uncomfortable. EN tends to occur during flare-ups and can improve with IBD treatments. [3]

Psoriasis, pronounced sore-rye-a-sis, is another common skin condition. It causes cells to build up quickly on the skins surface, creating small, dry scaling red patches that can be itchy and can appear anywhere on the body. If scratched, these patches may bleed. Topical creams and ointments can be used to treat mild to moderate psoriasis. Photo or ultraviolet light is another therapy used to treat this skin condition. Some IBD medications also treat psoriasis which is an added benefit to those with both conditions.

Aphthous stomatitis, better referred to as canker sores or cankers, are one of the most common oral EIMs of IBD. Canker sores are small, often whitish bumps found anywhere inside the mouth. This includes the lips, the roof of the mouth, the cheeks and tongue, and they can be painful. IBD patients who experience cankers tend to get sores when their disease is more active. Sores can be minor and disappear within a week. For some, they can last longer and require steroid treatment.

Some IBD patients are affected by eye conditions, with the most common being episcleritis, pronounced ee-pis-kler-itis. This eye condition affects the layer of tissue covering the white outer coating of the eye (also called the sclera), making the eye red, sore and inflamed. Episcleritis may present during an IBD flare and can be treated with cold compresses. In some cases, steroid drops may be required.

Two additional eye conditions linked with IBD are scleritis (skler-it is), inflammation of the sclera itself, and uveitis (u-vee-it is), inflammation of the middle layer of tissue in the eye wall. These conditions are more serious and can lead to vision loss, if not treated.
If you experience eye redness and pain to one or both eyes, contact your health care provider. They may ask you to be assessed by an eye specialist. Both scleritis and uveitis may be treated with steroid drops.

Bone Health
Bones play an essential role in our bodies. Not only do they give our body structure, but they also protect our internal organs and store an essential nutrient, calcium. Two important nutrients that contribute to the health of our bones are calcium, and vitamin D. Calcium helps build and maintain strong bones, while vitamin D helps absorb and retain calcium. When you have IBD, inflammation in the small intestine can impair nutrient absorption. In addition, certain medications used to treat flares can interfere with the body’s ability to absorb nutrients like calcium. When the body struggles to develop, build and maintain bone, the bones can become weaker.

How IBD can affect bone health 

The chemicals released as part of the inflammatory process can affect new bone growth.

Calcium and vitamin D are absorbed in the small bowel and are key to bone formation. When intestinal inflammation is present, it can make it more difficult for the body to absorb these important nutrients.

Can slow or reduce bone growth and the amount of calcium absorbed by the body.
Lack of exercise may also contribute to bone loss.  This is because impact, or weight bearing exercise, stimulates the body to strengthen the bones. [4]

Health care providers will monitor the strength and health of your bones by ordering a bone density scan, which can be done using ultrasound or a DEXA scanner. Your gastroenterologist might recommend that you take calcium and/or vitamin D supplement to ensure you are getting enough of these bone supporting nutrients.

Anemia, pronounced a-nee-me-a, is another common EIM of IBD.
If you are anemic, it means you have fewer red blood cells and/or lower levels of hemoglobin in your blood. Hemoglobin is a protein found in red blood cells and carries oxygen around the body.

There are different types of anemia, however the type most common among IBD patients is iron deficiency anemia (IDA). IDA can occur if there’s not enough iron in your diet, your body has difficulty absorbing iron from food, or you have ongoing blood loss from bowel inflammation. At your clinic appointment, your health care provider may order blood work to check your hemoglobin, vitamin D and inflammatory markers such as CRP.  They like to check your iron level too. If it’s low, your health care provider may recommend that you eat more foods rich in iron, take an oral iron supplement, and in some cases, may prescribe an iron infusion.

The main symptom of anemia is tiredness or fatigue. When iron levels are very low, you may experience ongoing fatigue or tiredness along with headaches and general weakness. It is important to share these symptoms with your gastroenterologist so they can monitor and provide you with the best advice and treatment to manage anemia.

IBD is well known to affect the gastrointestinal tract, but EIMs can be just as troublesome to a person’s overall well-being with dramatic effects on a person’s quality of life. It’s important to share any symptoms that you may experience outside of your gastrointestinal tract, because they may or may not be related to a flare, and often times are treatable.

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Melanie Watson contributed to the content and review of this article for accuracy and balance. We thank Ms. Watson for her time and contribution to our magazine. Melanie Watson, MN, NP is a Nurse Practitioner- Pediatrics at the London Health Science Centre (LHSC), London, Ontario and has an adjunct appointment in the Arthur Labatt Family School of Nursing at Western University.

[1] Stawarski A, Iwanczak B, Krzesiek E, et al. Intestinal complications and extraintestinal manifestations in children with inflammatory bowel disease. Pol Merkur Lekarski 2006;20:22-5.[2] Arthritis society of Canada, What is Arthritis?[3] Jang et al. EIMs of pediatric IBD[4] http://www.ibdclinic.ca/what-is-ibd/ibd-and-bones/