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.
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Crohn's Disease
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. Some perspective: An estimated 3.1 million Americans have been diagnosed with IBD, per the Centers for Disease Control and Prevention, but only about 780,000 have Crohn’s disease, according to the Crohn’s & Colitis Foundation.
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.
Do I Have Crohn's Symptoms?
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.
When to Call Your Doctor
If you suspect you’re experiencing symptoms of Crohn’s, or your digestive system has gone from functioning normally to, shall we say, problematic and you’re eating plenty but still losing weight, get to your doctor stat. It can take a while to diagnose Crohn’s—nine months to two years is not uncommon—and it’s critical to begin treatment as soon as possible to minimize the damage Crohn’s can do.
How Is Crohn's Disease Diagnosed?
There isn’t any single test that can diagnose Crohn’s, so be prepared to be poked and prodded a lot (sorry!) as your healthcare providers collect information from multiple sources. Start with your primary care provider (PCP), who can do a physical exam and initial bloodwork and stool testing—to check for signs of inflammation, infection, internal bleeding, anemia, nutritional deficiencies, and antibodies that can be indicative of Crohn’s—and rule out any other issues that may be causing your symptoms. Your PCP can then refer you to a gastroenterologist for further diagnosis. If your PCP is dismissive, go to a GI doc on your own (you can find one at crohnsandcolitisfoundation.org). Hint: Any gastroenterologist can treat Crohn’s, but there are some who specialize in IBD. These doctors will be more likely to be up on the newest treatments and to work with other specialists like nutritionists and mental health professionals who can help you manage your disease.
After the initial lab tests, your gastroenterologist will turn to other imaging tests to help with the diagnosis. These exams may include:
X-rays of the upper and lower GI tract, possibly with a contrast agent (a dye) that provides a clearer picture, helping to distinguish between normal and abnormal tracts.
Upper Endoscopy: A small camera mounted on the end of a lighted, flexible tube is used to look inside the GI tract from the top down— through your mouth and into the esophagus, stomach, and top of your small intestine. You’ll receive sedation to relax you, and you may also be put to sleep, though this is often not necessary.
Colonoscopy: An endoscopy from the bottom up: A small camera is inserted through the rectum to examine the large intestine and the end of the small intestine (terminal ileum). Fair warning: It requires cleaning out the intestines with a cocktail of oral solutions and laxatives beforehand (as if you don’t poop enough already).
Biopsy: Both colonoscopy and endoscopy give your doctor the opportunity to take a biopsy—removing a small piece of tissue to analyze for disease.
Small intestine imaging: Referred to as enterography or enteroclysis, these tests are used to get a peek at parts of your small intestine that can’t be seen by a colonoscopy or endoscopy. You’ll need to drink an oral contrast solution (we know, yuck!) that will then be viewed on a fluoroscopic x-ray, computed tomography (CT) scan, or magnetic resonance imaging (MRI) scan. Another option is a video capsule endoscopy: You swallow a small pill or capsule that contains a miniature camera, which takes pictures of your large and small intestines as it travels through before being pooped out. Amazing, right? Finally, a balloon enteroscopy—an endoscopy with one or two balloons attached to help pull the endoscope through your intestine—may also be used.
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.
Surgery for Crohn's
Yes, biologics have been a breakthrough in managing Crohn’s and disease progression over the last decade. But many patients eventually—up to 70 percent specifically—need surgery. The hope is that biologics will reduce this number significantly; they just haven’t been around long enough to say for sure. Surgery is necessary when medications are no longer effective, or if you develop complications such as a stricture, fistula, or fissure. The goal of surgery is to alleviate these complications, conserve as much of the bowel as possible, and improve quality of life, which it does for many patients.
More good news: Many of these procedures can now be performed laparoscopically, which is much less invasive. In laparoscopic surgery, instead of a large incision that allows the doctor access to your organs, several small openings are made in the abdomen, a tube is inserted in each hole, and the surgical instruments do their thing. One of the tools, the laparoscope, has a video camera on the end so that the surgeon can watch via monitor. As a result, you’ll have a faster, less painful recovery, less chance of infection, and smaller scars.
Procedures for Crohn’s include:
Strictureplasty: Chronic inflammation can cause thickening and scar tissue in the digestive tract, narrowing the intestine—known as a stricture—which can lead to blockages. This procedure widens the stricture without removing any of the intestine. The surgeon makes lengthwise cuts in the narrowed areas, then sews up the intestine crosswise, shortening and widening the affected area.
Fistula Removal: A fistula is an abnormal connection between two body parts. They form when inflammation causes ulcers that extend through the bowel wall. The most common types seen in Crohn’s patients are between two parts of the intestine or the intestine and another organ, such as the bladder. Fistulas require immediate medical attention, which may include medication and surgery to close. Surgical options include inserting a medical plug or applying medical glue to close the fistula, opening it up with a lengthwise incision that allows it to heal, or placing a thin surgical cord—known as a seton—in the fistula to drain any infection.
Abscess Drainage: Collections of pus, known as abscesses, can form in the abdomen, pelvis, or anal area. Surgical drainage of the pus cavity may be necessary to ensure the area heals completely. In that case, your surgeon will make a small cut in the abscess and insert a thin drainage tube that may be left in a week or longer until the area is completely drained.
Small and Large Bowel Resection: In this surgical procedure, a portion of your large or small intestine that has been damaged is removed and the two healthy ends are reconnected. Small bowel resection can be done to treat a stricture or repair a perforation or hole in the wall of the small intestine, which can occur as the wall weakens. A large bowel resection is similar to small bowel resection except that it removes diseased tissue in the colon and rectum.
Colectomy and Proctocolectomy: Patients with extensive disease or complications may need to have their colon removed (colectomy) or both the colon and rectum removed (proctocolectomy). A colectomy may be recommended if your rectum is unaffected by Crohn’s disease. After removing the colon, your surgeon will join the lower part of your small intestine (the ileum) to the rectum. Afterwards, you will still be able to pass stool through your anus. If you need to have both the colon and rectum removed, you will most likely have a variation of the surgery known as proctocolectomy with end ileostomy. In this procedure, the end of the small intestine is connected to a stoma, a small quarter-size surgical hole made in the abdominal wall to divert waste into an external osotomy bag. As unpleasant as that sounds, many people who have these procedures say it brings them great relief to have control over their lives again.
Other Types of Therapy That Can Help
If you have Crohn’s, you will likely be on meds to manage the disease and slow its progression. But—big but here—small studies have shown these complementary therapies may be helpful when used in combination with traditional treatment.
Adopt A New Diet
What you eat does not cause Crohn’s disease, but it can play a major role in easing symptoms and replenishing lost nutrients—crucial since it can be difficult to consume enough calories when you’re dealing with diarrhea and zero appetite. It’s a myth that patients with Crohn’s disease should completely avoid fiber, so talk with your gastroenterologist and work with a nutritionist who specializes in IBD. Prebiotics, typically found in high-fiber foods, act as food for gut microflora so they may also improve the balance of microorganisms.
What you can eat during a flare will be different than during remission, when you need to really nourish your body. Overall, however, experts recommend that people with Crohn’s avoid processed foods and primarily follow the Mediterranean Diet, with its emphasis on whole grains, vegetables, fruits, healthy fats, lean meats, fish, beans, and eggs. Another password: Probiotics. Foods that contain them such as Greek yogurt, cottage cheese, and fermented foods like kimchi, kefir, and sauerkraut.
Get Moving
Research has shown that exercise benefits the gut microbiome, and changes patients’ perceptions of their symptoms—they describe feeling less pain. Working out may also improve your digestion and reduce stress (a common trigger of flares) because it produces mood-boosting endorphins. Of course, Crohn’s patients aren’t always able to go all-out Crossfit, but you’ll still benefit from any type of physical activity. Low-impact activities like walking and swimming will be easier on your joints, and you may also want to try some strength training to help you rebuild muscles that can be weakened by both the illness itself and some of the medications you may take.
Take the Proper Vitamins
Crohn’s patients are often deficient in iron and Vitamin B12, and some research has shown that optimal levels of Vitamin D may reduce the risk for relapse.
Meditate the Right Way
Having a chronic illness is always stressful, and the symptoms of Crohn’s add to that exponentially. In an ironic twist, stress is also a major trigger for flares. Mind-body medicine, which focuses on the connection between your body and social and emotional well-being, can be very helpful for Crohn’s patients. This includes mindfulness practices like meditation, deep-breathing, and yoga, as well as joining support groups, which exist online as well as throughout the country.
What's Life Like for People With Crohn's?
We’ve said it before, and we’ll say it again: Crohn’s manifests differently from one person to the next. Symptoms can range from mild to severe, and may only occur during flares, which may be months or even years apart. That means patients can have long periods when they live a normal life. The medications you take may differ from other people with Crohn’s and can change over time. And with the increasing availability of biologics and biosimilars, the hope is that fewer patients will experience the complications that require surgery, particularly if they are diagnosed and begin treatment in the earlier stages of the disease.
Of course, when you have flares life gets infinitely more complicated: You’ll be more fatigued, both from the illness itself and the fact that symptoms will likely interrupt your sleep. Symptoms can be painful, inconvenient, and downright embarrassing. And many people are diagnosed in their teens—when so much of life is already mortifying—or their twenties when they are trying to build careers and develop romantic relationships.
Crohn’s patients may feel unattractive to others because of their disease, worry about gas and leaking stools during sex, and experience pain or erectile dysfunction—to name just a few of the challenges. Finding new ways to be intimate when you aren’t up for actual intercourse can help keep you and your partner emotionally connected. Showering together, massage, oral or manual stimulation, and using sex toys are all options, as are simply kissing, touching, and snuggling. Keeping a written record of your symptoms can also help you recognize patterns in the times of day when you feel better, so you can schedule some partner time when it’s more likely to be pleasurable.
For all these social and emotional reasons, working with a mental health expert can be hugely beneficial. Be honest about your anxieties, so that your partner doesn’t interpret your actions as disinterest. Talking about what you are going through with friends and family—as well as educating them about your illness and how you manage it—can also be cathartic and empowering for you and help lift the stigma and negativity surrounding Crohn’s and IBD
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