Let’s talk about Crohn’s disease
Doctor-approved scoop on causes, symptoms, treatments, and a jillion other facts and tips that can make life with Crohn's easier.
What Is Crohn’s Disease, Actually?
Before we talk about what Crohn’s disease is, let’s talk about what it isn’t. Because the chronic condition is, well, chronically misunderstood. While Crohn’s tends to conjure images of grimacing on le toilet, it doesn’t just impact the bowels. Crohn’s causes inflammation of the digestive or gastrointestinal (GI) tract. That means it can infect everything from your colon or anus, to your throat or mouth (in the form of canker sores). It is named after the gastroenterologist Burrill B. Crohn, who published the first medical report about it way back in 1932.
Most likely to strike in the small or large intestine, Crohn’s is an Inflammatory Bowel Disease (IBD), an umbrella term that also includes ulcerative colitis, as well as the less common indeterminate colitis and microscopic colitis, which only affect the colon.
Here’s another thing that may surprise you: Contrary to popular opinion, Crohn’s is not an autoimmune disease, like psoriasis and lupus. In those cases, the immune system produces antibodies that attack healthy tissue. With Crohn’s, the immune system’s white blood cells (which normally target harmful invaders like bacteria and viruses) attack the healthy tissue. That kicks up inflammation, causing ulceration and tissue swelling that limits the intestine’s ability to process food, absorb nutrition, and eliminate waste.
The end game of that nonsense? Abdominal pain, frequent diarrhea, and weight loss. Crohn’s symptoms vary, depending on the location of occurrence within the digestive tract, making it a unique disease for every person who has it.
And unlike autoimmune diseases (where 80 percent of those affected are women), Crohn’s affects men and women in equal numbers. While it can occur at any age, there are two key time frames when a Crohn’s disease diagnosis is most likely: between the ages of 15 and 30, and again in the 50s and 60s. It’s possible that some older people had a milder version that went undiagnosed for a while, but other cases are entirely new. About 20 percent of all Crohn’s cases occur in children.
What Causes Crohn’s Disease in the First Place?
Experts point to a likely combination of genetics, environmental triggers, and a possible imbalance in the microbiome, or gut flora, known as dysbiosis. Let’s review:
- Where You Live: Google Maps could likely spot clusters of Crohn’s. Okay, that’s a stretch, but seriously: The condition is more common in developed countries than undeveloped countries, in urban cities and towns rather than rural areas, and in northern rather than southern climates. Experts think the latter may be due to lower Vitamin D exposure where it’s not as sunny. The usual explanation for the other geographic differences is that people living in less developed areas are exposed to more germs and develop a stronger immune system, but experts are quick to acknowledge that this “hygiene hypothesis” is simplistic at best.What can’t be dismissed is the fact that we are now seeing an increase in Crohn’s and ulcerative colitis in places where they were once rare, such as Africa and South Asia, which brings us to the next round of potential triggers. Western habits such as smoking tobacco, eating processed food, and exposure to antibiotics, which are all less common in underdeveloped countries. As areas like these become more modernized, researchers see rates of IBD go up. While we don’t yet have research to prove it, it’s also worth noting that, anecdotally, clusters of Crohn’s have been observed in areas that have been linked to chemical contamination.
- Your Microbiome: Your body is an Airbnb to trillions of microorganisms, including good and bad bacteria. These little guests are known collectively as the microbiome. Many are housed in the gut and digestive tract, along with 70 percent of our immune system. In healthy people, all this gut flora can live together happily. When the balance gets thrown off—which can be due to illness, prolonged use of antibiotics, smoking, or an unhealthy diet—it’s known as dysbiosis, a state that has been linked to intestinal disorders.
- Genetics: IBD runs in families, but many people with a family history will never develop it. Studies show that from 5 to 20 percent of IBD patients have a first-degree relative—parent, sibling, or child—with it. The genetic risk is higher for Crohn’s than ulcerative colitis, and also significantly higher for either type when both parents have IBD. While Crohn’s occurs in people of every ethnic background, it is most common among Caucasians, particularly Jews of eastern European descent. Still, experts believe there is likely more than one gene at work in the development of Crohn’s and the majority of people who are diagnosed have no clear family history of IBD.
Most Crohn’s patients experience unintended weight loss, and an urgent need to move their bowels, along with the sensation that they’re never quite “done” and will need to go again.
And yet, some Crohn’s patients defy expectations: They may be over- rather than underweight, and experience constipation, which may be due to medications like iron supplements, pain relievers, and anti-diarrheals; eating too little fiber or too little food in general; not drinking enough water; or an underlying complication such as a stricture or blockage.
Your Crohn’s symptoms will depend on where you are in the 3-2-1 cycle. Are your symptoms mild, moderate, or severe? Are you in a flare or are you in remission? In a flare, the disease is at its most active and symptoms are at their worst. During remission, the disease isn’t cured. But the symptoms diminish or go away entirely for a certain amount of time—weeks, months, or years. And the absolute most crucial thing—the first thing, really—you need to determine is the type of Crohn’s you may have. So let’s start with that number one—the type of Crohn’s:
- Ileocolitis: The most common type of Crohn’s, Ileocolitis affects the end of the small intestine (known as the terminal ileum) and the colon. Symptoms include diarrhea and cramping, pain in the middle or lower right abdomen, and unintended weight loss.
- Ileitis: This form affects only the small intestine and is also very common. The symptoms are similar to ileocolitis and may include cramping and abdominal pain after meals, diarrhea and unintended weight loss. Patients may also develop fistulas or abscesses in the lower right section of the abdomen.
- Gastroduodenal Crohn’s Disease: The stomach and the beginning of the small intestine, known as the duodenum, are affected in this much less common type. Symptoms include nausea, vomiting, loss of appetite, and unintended weight loss.
- Jejunoileitis: This form affects the upper half of the small intestine, known as the jejunum, and is characterized by patchy areas of inflammation in the intestine. Symptoms include abdominal pain and cramps following meals as well as diarrhea. Fistulas may form in more severe cases.
- Crohn’s Colitis: This type affects only the colon and causes diarrhea, rectal bleeding, and abscess, fistulas, and ulcers around the anus. Skin lesions and joint pain are also more common with this form. About 20 percent of patients have this type.
Because Crohn’s can jump around, affecting the GI tract in patches, some people develop inflammation higher up in the esophagus or mouth. While much less common, when these areas are affected, you might get mouth sores or heartburn, or have chest pain and difficulty swallowing.
Crohn’s can sometimes be an out-of-colon experience. The disease can present as extraintestinal (outside the intestines) or systemic symptoms. These occur in up to 36 percent of patients and, like intestinal symptoms, they can be worse during a flare. Some of the more common systemic problems are swollen, painful joints and lower back pain; skin complications like rashes, bumps, and open sores; redness or pain in the eyes and vision changes; fatigue; night sweats; fever; loss of normal menstrual cycle; osteoporosis; and kidney stones.
What Are the Best Crohn’s Disease Treatments?
If only there were a fairy endoscopy for that. But….since it’s a very individual disease, there is no standard line of treatment for Crohn’s. There are, however, increasingly effective options—it just takes time to figure out which will work for your symptoms and level of severity. Forty to 50 percent of patients won’t have a response to a specific drug, but experts don’t know who, why, or which ones, so you can expect a fair amount of trial and error. Sometimes a combination of medications works best. Treatments will also likely evolve over time. What worked five or 10 years ago may lose its effectiveness as your disease gets worse. Plus, there are new medications being developed that may prove to be more effective. The good news is that treatments are forever evolving and improving.
Medications for Crohn’s: You’ve Got Options
Two things to note: Some prescribed drugs induce remission, others are maintenance meds, which help keep you in remission.
- Aminosalicylates: These compounds contain 5-aminosalicylic acid (5-ASA) and, although used mostly for treating ulcerative colitis, help decrease inflammation in the GI tract for mild to moderate flares. They are also sometimes used as a maintenance treatment to prevent relapses. However, these drugs work best in the colon and are not effective if Crohn’s is only in the small intestine.
- Corticosteroids: These drugs suppress the entire immune system and are used for moderate to severe flares. They should only be used short-term to control flares and never as an ongoing maintenance med. Why? They have significant side effects if you take them for more than three months, including bone loss, cataracts, infection, weight gain, sleep disturbance, and mood swings.
- Immunomodulators: These medications modify immune system activity so it cannot cause ongoing inflammation. They’re usually given orally, with the exception of methotrexate (brand name Rheumatrex), which is an injection. They are typically used to maintain remission in patients who have not responded to other medications or have only responded to steroids.
- Antibiotics: These will usually be prescribed when patients develop abscesses or fistulas, or a highly contagious intestinal infection known as Clostridioides difficile (C. diff), which Crohn’s patients are especially prone.
- Biologics/Biosimilars: This class of Crohn’s treatment is the most recently developed and was initially used for people with moderate to severe symptoms that have not responded well to other therapies. Now biologics are used more frequently as first-line treatments in many patients. They are created from antibodies grown in a lab, and work in two ways: they stop certain proteins in the body from causing inflammation or block white blood cells from attacking inflamed tissues. Biosimilars are nearly identical copies of biologics. Although they are technically not generic drugs, biosimilars are less expensive than taking the original biologic, and are equally safe and effective.