Beyond the Bathroom: Lesser Known IBD Symptoms
Last updated: December 2021
We know that inflammatory bowel disease is so much more than just urgency and diarrhea. Many of the most impactful symptoms happen far outside the bathroom walls. And while some symptoms can be managed with an overall management plan, sometimes it's helpful just to know you're not the only one experiencing those lesser known, often invisible, symptoms that no one seems to talk about!
Here are a few of the less common symptoms discussed within our community. How does your IBD experience compare to that of others? Vote in the polls to see how others responded:
A top IBD symptom: fatigue
Fatigue is often called the most under-managed problem for people with inflammatory bowel disease. In fact, the 1100 respondents in our Ulcerative Colitis in America survey ranked Fatigue as their most frequent symptom - above urgency and abdominal pain! And our Crohn's disease In America survey respondents expressed a similar impact - 60% ranked fatigue as one of their most frequent symptoms, and 70% of those indicated that fatigue is the most difficult symptom to manage.
There are many factors that can cause and/or worsen this invisible symptom, and unfortunately, many friends and family underestimate its impact, which can lead to undeserved guilt and stress.
Do you experience fatigue because of your IBD?
Joint inflammation with Crohn’s or UC
While IBD is an inflammatory condition of the digestive tract, many experience what's called "extra-intestinal manifestations," or inflammation and symptoms outside the digestive tract which are more reminiscent of other autoimmune disease, such as rheumatoid arthritis or lupus. Almost 35% of individuals with Crohn's disease experience Joint Inflammation or arthritis at some point. Peripheral arthritis, which affects the joints in the limbs, is the most common, but some also experience spinal arthritis, which affects the spine and back.
Despite the fact that this extra-intestinal inflammation occurs in over a third of the IBD population, there is little awareness society-wide.
Have you ever noticed joint inflammation with IBD?
Fever and night sweats
If you've ever woken up at 3am drenched in sweat for no apparent reason, you're probably familiar with fever and night sweats. For all human bodies, not just for those with IBD, a fever is a response to disease or infection, and as such, it is unfortunately pretty common for those managing Crohn's or UC. A fever could develop as a part of the inflammatory process, or it could be an indicator of more acute complication such as an abscess or toxic megacolon.
And to make things even more complicated, fever, along with fatigue and many other symptoms, could also be a side effect of certain IBD treatments.
Do you ever get a fever or night sweats with IBD?
Mouth sores from IBD
One fact about Crohn's disease that many people do not realize is that it can affect any part of the digestive tract, from mouth to anus. Mouth Sores, including lesions, cracks, swelling and redness, can occur whenever. Contrary to popular thought, oral flares do not necessarily happen at the same time as intestinal flares and are therefore quite unpredictable.
For those with Behçet's disease, a rare autoimmune disease in the IBD family, mouth ulcers are often the most common symptom, in addition to eye inflammation and digestive ulcers.
Have you noticed mouth sores caused by IBD?
While people most often think of urgency and diarrhea when they think of inflammatory bowel disease, it's not unlikely for someone to also experience Constipation. Often, constipation is a result of an IBD complication, such as a stricture in the digestive tract or an anal fissure. Both of these complications can make it incredibly difficult to pass waste, therefore causing constipation.
Do you ever experience constipation because of your IBD?
Have you experienced any other rare or strange symptoms related to your IBD? Please share in the comments, or on our Facebook page - you are probably not alone in your experience!
Does living with IBD impact you financially?