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When IBD moves beyond the bowel – Extra-intestinal IBD symptoms

I had someone ask me recently what symptoms I have experienced from IBD and, y’all… the list is long. An important part of IBD awareness is sharing knowledge about the different ways these diseases can affect any given individual. There are the typical symptoms of urgent-and-often bathroom trips, malnutrition and weight loss, and fatigue. But the physical manifestations of inflammatory bowel disease go far beyond this. There are symptoms due to the presence of inflammation in the body, as well as symptoms stemming from the medications taken for the treatment of IBD. Here is a rundown of a few of the potential manifestations outside of the digestive system, but is by no means an exhaustive list. 
Eyes

Inflammation in the eyes is often called iritis or uveitis. This is something that I have dealt with multiple times in the past. The symptoms of this inflammation are eye discomfort, redness, sensitivity to light and decreased or blurred vision. For me, it usually started by feeling as if there was something stuck in my eye, usually bothering me when I would blink, and soon my vision would begin to blur. It is most often treated by a steroid eye drop that can be prescribed by an ophthalmologist. In my experience, after a diagnosis by the eye doctor, the inflammation would clear up quickly after I began using the drops.

Joints

Outside of the intestinal IBD symptoms, joint pain has been the most difficult part for me to deal with. This pain may be caused by inflammation in the lining of the joint (arthritis), but sometimes the pain occurs without inflammation (arthralgia). The most commonly affected joints are the knees, ankles, wrists, elbows, and hips. As opposed to rheumatoid arthritis, the arthritis most commonly seen in IBD patients is not degenerative.

Skin

One of the strangest IBD-related symptoms I’ve ever experienced has got to be erythema nodosum, which manifests as painful red lumps. It’s actually caused by inflammation in the fatty layer of your skin. The lumps can appear on almost any part of the body, but are most common on the front of your shins, as mine were. Erythema nodosum is most often treated with the same methods as IBD, so usually your current treatment will help to reduce these lumps.

Bones

Your bone health can be affected by IBD. Like the rest of your body, parts of your bones are continuously broken down and regenerated. Osteoporosis occurs when the regeneration can’t keep up with the breaking down, causing your bones to become brittle and weak. I have been told I have osteopenia, which is often a precursor to osteoporosis, where your bones are weaker than average, but not to the same extent. This manifestation of IBD is not as directly related as many others are. It most often occurs as a secondary symptom due to either malnutrition or prolonged use of corticosteroids or a combination of both. 

Circulatory system

Anemia is probably one of the most common extraintestinal manifestation of IBD. It means that your blood is not carrying enough oxygen throughout your body and is usually due to low levels of iron, B12 or folate. Patients with IBD often become anemic due to blood loss, malabsorption by the intestinal tract, and diet. Anemia is a major cause of fatigue in IBD patients, and can also cause dizziness, increased heart rate, poor circulation, even hair loss. 

Mental health

Patients with IBD are at a greater risk for mental heath conditions, specifically depression and anxiety. It’s not a surprising statistic, especially considering everything discussed thus far. Depression often involves feeling persistently sad or “empty”; feelings of hopelessness, worthlessness, negativity; loss of interest in activities once enjoyed; difficulty concentrating; insomnia or oversleeping; restlessness and irritability. Anxiety is often experienced as feeling nervous or on edge; not being able to control worrying; trouble relaxing; constant dread. These mental health conditions are commonly underdiagnosed in the IBD community, which is very sad considering they are often treatable, either via therapy or medical treatment. I was one who dealt with a lot of depression as a kid when first diagnosed, but I never spoke with anyone about it or entered into any kind of treatment. I regret not seeking out help at the time. 

As you can see, there is so much more to inflammatory bowel disease than just symptoms of the digestive system. And this is just a small sampling of symptoms that I have experienced personally, but there are other symptoms and manifestations that I have not covered here. Any time you are dealing with a strange symptoms outside of the digestive tract, I urge you to bring it up with your gastroenterologist, because there may be a link between that symptom and your IBD that you may not have realized.

Citations:
Levine, J. S., & Burakoff, R. (2011). Extraintestinal manifestations of inflammatory bowel disease. Gastroenterology & hepatology, 7(4), 235-41.
Loftus, E.V., Jr., Guérin A., Yu, A.P. (2011). Increased risks of developing anxiety and depression in young patients with Crohn’s disease. Am J Gastroenterology, 106(9), 1670–7. 
The Crohn’s & Colitis Foundation. (2017, April 10). Signs and Symptoms of Depression. Retrieved from http://www.crohnscolitisfoundation.org/resources/depression.html
The Crohn’s & Colitis Foundation. (2016, December 5). Stress and Anxiety. Retrieved from http://www.crohnscolitisfoundation.org/resources/stress-and-anxiety.html

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2 Comments

  • Reply Debbie McKenzie

    Do you have Chrons or UC? Also what meds are you on, if any? I’ve had my ileostomy almost 4 years (chrons) and ever since my recovery I’ve really had no problems. I have a remicaid infusion every 8 weeks.

    May 23, 2025 at 8:08 pm
    • Reply Stephanie Hughes

      I have Crohn’s. Not currently on meds but have been on many in the past, of course. I’m so glad you have been doing well since your surgery!

      May 23, 2025 at 8:11 pm

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