IBD Is Not Just In The Gut (NSFW)

CrohnoEyeballWhile inflammatory bowel disease is mostly what it says — a disease of the gut — it can also create problems elsewhere: in the eyes, skin, joints, liver, and other organs. Those problems are called “extraintestinal manifestations” (EIM), and are the subject of an article* in this month’s issue of Inflammatory Bowel Diseases. It is an important reminder that IBD is not just in the gut.

Just a warning; it includes graphic pictures that are probably not safe for work. One of the figures is reproduced at the bottom of this post; please do not scroll all the way down if it will be disturbing to you.

According to the article, extraintestinal manifestations are reported in 6% to 47% of patients with IBD — so at most, about half of us will see some form EIM in the course of our disease. In 25% of patients, EIMs occur before the main gut symptoms. Some patients will have several EIMs at the same time.

Just as nobody quite knows what causes IBD, we have little sense of what causes EIMs. The strongest theory is that the same immune system reaction that triggers an attack on the gut then turns to the skin, joints, and other organs. Like IBD, there is a genetic pattern to EIMS — 70% of parents and children with IBD have the same EIMs, and 84% of siblings with IBD. Some genetic markers for IBD are strongly linked with EIMs generally, and some genetic markers are linked to specific EIMs.

So what are the EIMs? Here’s the list:

  • Peripheral arthritis/arthralgia is joint pain or inflammation, and affects up to 20% of patients with IBD. Type I arthropathy is correlated to bowel inflammation, while Type II is independent of disease activity and often lasts longer than Type I.
  • Axial arthropathy is pain or inflammation in the spinal joints, and affects up to 25% of patients — males more so than females. Ankylosing spondylitis is one form, affecting 5-10% of patients.
  • Erythema Nodosum refers to raised nodules in the skin, which can be tender and red to purple in color. This EIM affects up to 15% of patients with IBD, and usually appears on the legs.
  • Pyoderma gangrenosum affects up to 2% of patients, and creates ulcers on the skin. Sometimes the ulcer develops from erythema nodosum. This EIM is extremely painful and debilitating, and can be difficult to treat.
  • Sweet’s Syndrome is primarily nodules, but can also be accompanied by arthritis, fevers, and inflammation of the eye.
  • Apthous lesions are ulcers inside the mouth, sometimes called ‘canker sores’, and affect up to 10% of patients.
  • Pyostomatitis vegetans also affects the mouth, with multiple sores in a cobblestone pattern. The sores may bleed or ooze, and affect up to 10% of patients.
  • Episcleritis, Scleritis, Uveitis are inflammation of layers of the eyeball, affecting 2% to 5% of patients. These EIMs can cause severe eye pain, blurred vision, and permanent damage to the eyes.
  • Primary Sclerosing Cholangitis affects up to 7.5% of patients, and refers to inflammation of bile ducts. Most patients with PSC will need a liver transplant.

The authors conclude by pointing out that EIMs “can even be more debilitating than the intestinal disease,” and recommend: “Clinicians who care for patients with IBD must recognize those various systemic manifestations, as failure to diagnose and treat them early may result in major morbidity.” By learning what to look for, patients with IBD can also help their providers recognize and identify EIMs and find appropriate treatment.

While this is a helpful article in terms of recognizing problems linked to IBD, keep in mind that it does not cover all of the possible consequences of IBD — especially not the mental aspects, like anxiety and depression. These EIMs are only those directly linked to the inflammatory process of IBD, and not those problems indirectly resulting from the disease, its treatment, or surgery. So the bad news: you may experience other problems not listed here. But it is still important to know and recognize the EIMs associated with IBD.

Now that awful picture: “(A) Oral aphthous ulcers, (B) Sweet’s syndrome, (C) erythema nodosum, (D) pyoderma gangrenosum, (E) peristomal pyoderma gangrenosum, (F) episcleritis, (G) uveitis with hypopyon and dilated iris vessels, (H) conventional x-ray of the lateral spine demonstrating syndesmophytes (bamboo spine), (I) plane radiograph of the ileosacral joints with bilateral sacroiliitis, (J) plane radiography of the sacrum with bilateral ankylosis, (K) coronal magnetic resonance image of the sacroiliac joints with active inflammation mainly on the left side and chronic inflammatory changes on both sides.”

ibd-21-1982-g001

*The article is Vavricka, SR; et al. “Extraintestinal Manifestations of Inflammatory Bowel Disease”, Inflammatory Bowel Disease 21(8); August 2015. doi:  10.1097/MIB.0000000000000392

 

 

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8 thoughts on “IBD Is Not Just In The Gut (NSFW)

  1. My son is 13 and just diagnosed a few months ago. I had no idea about all of these *side conditions. Thank you for sharing this. Time for me to do more research!

    1. Jill — consider joining Crohnology, our community for patients, caregivers, and physicians. We can help you with your research and any questions, plus we have tools for tracking your son’s health and ways to meet other patients. It’s free.

  2. Jill, consider the SCD diet for your son. After 2 bowel resections and 25 years of no specific diet restrictions, I wish I knew then what I know now about food and how it affects the gut. The diet made a big difference in how I feel and I haven’t been on meds for over 3 years. Tons of info out there. It can be overwhelming.

  3. Earlier this year, I developed a nasty lung disease called Interstitial Lung Disease. It can be caused by a number of things including methotrexate, infection, and Sjogren’s Syndrome. But mine, ironically, is caused by my Crohn’s Disease. The official diagnosis is Interstitial Lung Disease secondary to Crohn’s, and it’s quite rare. I think in addition to the EIMs mentioned above, it’s important to recognize that autoimmune diseases can be triggered or a part of an original autoimmune disease that a patient has had for some time. Thank you!

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