Symptoms beyond the gut in IBD
Do you experience joint pains, skin or eye problems with your IBD? Did you know that this can be related to our IBD and is quite common?
As if the gut symptoms we get with IBD weren’t enough already, it is also common for some people to experience other symptoms in other parts of our body too. These are known as extra intestinal manifestations (EIMs) and if you experience these you are not alone.
Who experiences EIMs?
Around 43% of CD patients and 31 % of UC patients experience extra symptoms outside their intestines, with more women (50%) experiencing these compared to men (34%).
Although EIMs seem to occur more frequently in CD compared with UC, the location of the CD disease does not seem to influence the risk of EIMs. On the other hand, in UC, EIMs seem to occur more frequently in pancolitis (inflammation of the entire colon) compared to ulcerative proctitis (ulceration in the rectum only). The research shows that most people with EIMs in IBD only have one type (63%) and 27% have two.
These extra intestinal symptoms can occur at any time, and in a quarter of people occur up to 2 years before diagnosis of IBD. For the other three quarters of people experiencing these symptoms, data shows that they can begin anywhere between 29 and 183 months (around 2.5-15 years!) after diagnosis but I am sure there are also people who experience these before and after this time too, because, as we know, everyone with IBD is different in what they experience.
Why do we get EIMs in IBD?
The truth is we don’t really know why we can get these extra symptoms but there are some different reasons that have been proposed. These include:
Expansion of the inflammatory response from our bowel to other parts of our body through different mechanisms
Independent inflammatory events in themselves caused by changes in immune function, changes in the gut microbiota and increased intestinal permeability, genetic susceptibility, or environmental factors (e.g. diet and smoking).
Knock on effects of damage to the lining of the intestine which can prevent the absorption of nutrients from food, such as osteoporosis and anaemia.
Side effects of IBD treatment.
It is thought that it may be one or a number of the above that come together to cause EIMs.
What are the most common EIMs in IBD?
Joints
Joint issues or arthritis are the most common EIM in IBD, affecting as many as 30% of people. Although we often associate arthritis with older people it can affect younger people with IBD and can cause pain and swelling and reduce movement of our joints. There are different types of arthritis that people with IBD can experience including peripheral arthritis (affecting joints in the arms and legs), axial arthritis (aka spondylitis or spondyloarthropathy, affecting the lower back) and ankylosing spondylitis (affecting the spine). Arthritis in IBD usually improves as IBD improves.
Skin
Skin issues are the second most common EMI in IBD affecting up to 20% of people. These can range from mouth ulcers (Aphthous Stomatitis or canker sores) to psoriasis. These usually improve as the disease is bought under control. Some skin disorders can be side affects of medications, for example, anti-TNF agents (such as infliximab and adalimumab) may cause a psoriasis-like rash (psoriasiform).
Eyes
Around 10% of people with IBD experience EMI with their eyes. Most are treatable and do not pose a huge threat to sight.
Anaemia
Anaemia is very common in IBD and can be caused by low iron, B12, or folate. This is often caused by poor absorption in the intestines, and in the case of iron, blood loss from bleeding in the intestines.
Bones
Reduced bone density, namely osteopenia (low bone density) and osteoporosis (brittle bones) are common in IBD affecting around 30-60% of people. This can happen with long term steroid use, long term active disease or vitamin D deficiency (common in IBD).
Liver and kidney issues are also EMIs seen in IBD.
How are they treated?
Some EIMs are associated with IBD activity (i.e. active disease or remission) and improve with IBD treatment and as disease activity improves. Others can be more independent and may need specific treatment.
Personally, I have experienced skin problems with my UC, mainly psoriasis, eczema and rosacea. When I had active disease before surgery, I used to get mouth ulcers and anaemia. What EIM’s do you experience?
If you’d like to read more about EIM’s I have put some links below to some useful papers and information sites:
Crohns & Colitis Foundation (2020) Extraintestinal Complications of IBD. [online] Available at [https://www.crohnscolitisfoundation.org/what-is-ibd/extraintestinal-complications-ibd#:~:text=When%20the%20disease%20affects%20other,that%20IBD%20patients%20may%20experience.]
Viola et al (2020) Extra-intestinal manifestations in inflammatory bowel disease. APMB. 108(1). https://cab.unime.it/journals/index.php/APMB/article/view/APMB.108.1.2020.SD1/pdf
Vavricka, S. R., et al (2015). Extraintestinal Manifestations of Inflammatory Bowel Disease. Inflammatory bowel diseases, 21(8), 1982–1992. https://doi.org/10.1097/MIB.0000000000000392
Levine, J. S., & Burakoff, R. (2011). Extraintestinal manifestations of inflammatory bowel disease. Gastroenterology & hepatology, 7(4), 235–241. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127025/
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