Beyond the gut: Lesser-known symptoms of inflammatory bowel disease

Person itching their eyes

People often associate inflammatory bowel disease (IBD) with an urgent need for a bowel movement, diarrhea, bloating and abdominal pain. Many don’t realize that not only does IBD consist of two distinct diseases — Crohn’s disease and ulcerative colitis — it can have many lesser-known symptoms.

We specialize in treating patients with IBD at the University of Chicago Medicine's Inflammatory Bowel Disease Center. Here are answers to some questions about the range of IBD symptoms.

What are some lesser-known IBD symptoms?

Anywhere from 25% to 40% of patients with IBD have something called extra-intestinal manifestations (EIMs). These are symptoms that happen outside of the gastrointestinal tract. For some patients EIMs can help predict a coming flare-up of their IBD. For other patients, EIMs occur independently from the timing of their IBD episodes.

When your body is inflamed, this can affect different organs and shake up your system in general. The most common EIMs in IBD patients is joint pain, swelling and stiffness. Other EIMs include:

  • Uveitis and episcleritis — Up to 10% of patients may experience problems with their eyes, like inflammation to the middle layer of the eye wall (uveitis) that causes pain and redness, or inflammation and redness to the whites of the eyes (episcleritis).
  • Erythema nodosum — This skin inflammation causes tender red bumps or nodules on the front of the legs and sometimes on the arms.
  • Pyoderma gangrenosum — This skin condition causes large, painful ulcers to develop, often on the legs and sometimes around the opening of an ostomy site.
  • Slowed growth — Children with IBD may have gastrointestinal inflammation that prevents them from getting the nutrition and calories needed to maintain normal growth rates for their age.
  • Anemia — Poor absorption of iron, ongoing blood loss in the gastrointestinal tract and inflammation can lead to IBD patients becoming iron deficient.

Other lesser-known IBD symptoms exist that affect the GI tract include:

  • Sores (cankers) inside the mouth
  • Ulcers in the esophagus
  • Fistulas or abscesses involving the anus or rectum

Do extra-intestinal manifestations go away?

Often, EIMs go away once your IBD is under control. Many immune-related conditions like IBD have treatments that work on a couple of different diseases at once. For instance, an IBD patient who has joint problems may benefit from anti-TNF medications or JAK inhibitors.

However, if your bowel issues are controlled and you’re still having joint pain, your doctor may send you to a rheumatologist because there could be joint issue unrelated to your IBD. Many IBD patients benefit from a multidisciplinary care team: Colorectal surgeons, dermatologists, rheumatologists and liver specialists are often key players for getting control of the various symptoms linked to IBD. Involving your primary care doctor in your IBD care is a minimum.

What symptoms are sometimes mistaken for being IBD?

Prolonged or high-dosage use of certain nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and naproxen, can irritate the gastrointestinal tract and cause bowel ulcers that end up being mistaken for IBD during a colonoscopy. In countries where tuberculosis is common, some patients can be misdiagnosed as having tuberculosis when in fact they have IBD. In such situations, a pathologist can determine whether damage to gastrointestinal tissue is due to IBD or something else.

What are some of other challenging aspects of having IBD?

Because the main symptoms of IBD — rectal bleeding, having to defecate frequently (sometimes up to 20 times a day), fecal incontinence, abdominal pain and bloating, nausea, vomiting and diarrhea — can be so grueling to deal with, many patients end up anxious and depressed. This can carry over to their sexual health as well. Patients with these symptoms may understandably not feel like being intimate. Plus, intercourse can feel painful if your pelvic floor muscles are so tight from constantly holding in bowel movements, and surgery can leave scarring and impaired nerve function in the pelvis.

Here again, having a team of collaborating, multidisciplinary experts is key when managing IBD. Connect with a medical professional who can help you with your mental health, and ask about physical therapists who specialize in rehabilitating the pelvic floor

Sushila Dalal, MD

Sushila Dalal, MD

Gastroenterologist Dr. Sushila Dalal cares for patients with inflammatory bowel disease (Crohn's disease and ulcerative colitis). She is interested in the unique challenges that face women with IBD.

Read Dr. Dalal's physician profile
Alexandra Masching, APN

Alexandra Masching, APN

Advanced practice nurse Alexandra Masching specializes in treating patients with IBD at the University of Chicago Medicine’s Inflammatory Bowel Disease Center.