When we think of Crohn’s disease, we often think of the impact that it has on our gut and gastrointestinal tract. This can include symptoms like bloating, abdominal pain, and nausea.
But when you’re diagnosed with Crohn’s disease, you can also experience symptoms outside of this region of the body through what’s known as “extraintestinal” symptoms, or symptoms that occur outside of the intestines. Extraintestinal symptoms of Crohn’s disease vary widely, including fatigue, anxiety and depression, skin conditions, musculoskeletal conditions, and even joint pain.
Being aware of these potential presentations of Crohn’s disease can help you tackle the condition and manage your symptoms as needed.
Dealing with things like pain or anxiety can be challenging. But you can create a game plan for keeping those symptoms at bay, which can go a long way in your overall care plan and help you feel like your best possible self.
If you’re diagnosed with Crohn’s disease, here’s everything you should know about extraintestinal symptoms and a few easy steps you can take to help improve your quality of life.
Fatigue is one of the most frequently reported extraintestinal symptoms of Crohn’s disease. You may feel an overwhelming sense of tiredness, lack of energy, or feeling of exhaustion, which neither rest nor sleep seems to resolve. In fact, nearly 80 percent of people with active Crohn’s disease and 50 percent of people with Crohn’s disease in clinical remission experience fatigue, so it may be even more common than you think.
Fatigue with Crohn’s disease can have a number of causes, including:
- nutritional deficiencies
- medication side effects
- poor sleep
Anxiety and depression are common in Crohn’s disease. This is because stress can trigger flares or develop or worsen after a flare-up. Breaking the cycle through stress reduction and relaxation techniques can help you lower anxiety while also managing symptoms like diarrhea, which means prioritizing your mental health is a win-win for your whole body.
Feelings of anxiety can include:
- nervousness, being anxious, or feeling on edge
- not being able to stop or control worrying
- trouble relaxing
- feelings of restlessness
- being easily annoyed
Depression is also a serious condition that can present in Crohn’s disease. This can include:
- persistent sad, anxious, or “empty” mood
- feelings of hopelessness or negativity
- loss of interest in previously enjoyed activities
- difficulty concentrating
Up to 20 percent of people with Crohn’s disease experience skin conditions. These can include:
- red bumps, known as erythema nodosum, that usually appear around the ankles or shins
- small blisters, known as pyoderma gangrenosum, that can join together to form deep chronic ulcers
- skin tags
- abnormal channels, known as enterocutaneous fistulas, that form from the intestine to the skin
- small tears in the lining of the anal canal known as anal fissures
- canker sores in the mouth
Other less common skin conditions that can arise from Crohn’s disease are:
- areas of decreased skin pigmentation known as vitiligo
- inflammation of blood vessels that can cause reddened areas known as vasculitis
- flaky rashes (psoriasis)
- in extreme situations, skin cancer
Sometimes, skin conditions can also be caused by medication, rather than Crohn’s disease itself.
One of the best ways to stay on top of skin conditions is to find a trusty dermatologist to examine your skin on a regular basis. This can help keep you aware of any changes in existing skin conditions or the development of new ones.
Medication management is also essential. Work with your treating physician or healthcare team to identify any medication-related skin side effects and how to treat them. Those with mouth ulcers can also work with their dentist to find a mouthwash or toothpaste that can help reduce pain or swelling.
Inflammation from Crohn’s disease can affect your entire body, especially your musculoskeletal system and your joints. Arthritis, or inflammation of the joints, is seen in up to 30 percent of people with Crohn’s disease. Pain or swelling from arthritis can also cause reduced flexibility, which can present mobility challenges for some people.
Musculoskeletal conditions that can also occur with Crohn’s disease include:
- fibromyalgia, widespread musculoskeletal pain that includes fatigue, sleep, memory, and mood issues
- inflammatory back pain
- sarcopenia, which includes loss of muscle mass and function and low muscle strength
To manage musculoskeletal conditions or joint pain from Crohn’s disease, you can use ice to alleviate swelling or heat to reduce pain. NSAIDs or nonsteroidal anti-inflammatory drugs, like Motrin or Aleve, can also help you manage pain and swelling. If you’re dealing with mobility challenges, consider yoga or light stretching to improve flexibility.
Fatigue can be managed through a number of strategies. Identifying the cause of your fatigue can be a great start, but even if you can’t pinpoint the exact root, that’s OK.
Fatigue can be a sign of uncontrolled inflammation, so anti-inflammatory treatment is essential. This means making sure you don’t skip any medication and that it still works for you. Remember to keep your doctor in the loop about any changes you experience.
Keeping your stress levels low, improving your sleep routine, managing iron and vitamin deficiencies, and reviewing your medication with your doctor can help you feel better.
It’s also important to prioritize your mental health. Depression can be treated through cognitive behavioral therapy and/or medication management, both of which can be extremely helpful.
Setting realistic goals with small tasks rather than large ones can also help you implement positive change in actionable ways that won’t seem overwhelming.
It’s a good idea to keep an open line of communication with loved ones and to understand that change doesn’t happen overnight, but rather a little bit each day. All of these strategies can reduce anxiety levels, as can relaxation techniques or meditation. Keeping your stress as low as possible can significantly benefit you.
Though Crohn’s disease can come with extraintestinal symptoms, like fatigue, anxiety and depression, skin conditions, and musculoskeletal conditions or joint pain, most can be treated or managed. The key, though, is committing to care and change.
A combination of a positive attitude, having trusted physicians on your team, and keeping tabs on your sleep, diet, and exercise can help you successfully manage Crohn’s disease both inside and outside of the gut — for life.