The symptoms you experience with Crohn’s disease will likely be awkward at best, painful at worst, and entirely unique to you since the disease doesn’t affect anyone in quite the same way. Your condition could be mild and go for years undetected. Or it could be more severe, with frequent flares and other complications. No matter what your situation, knowing the signs of the disease is the first step to staying one step ahead of it. Here’s what to look for.
We went to some of the nation's top Crohn's experts to bring you the most scientific and up-to-date information possible.
Jami Kinnucan, M.D.Gastroenterologist, IBD Specialist, and Assistant Professor of Medicine
Neilanjan Nandi, M.D.Director of the Inflammatory Bowel Disease Center
Frank I. Scott, M.D.Gastroenterologist, IBD Specialist, and Assistant Professor of Medicine and Gastroenterology
What Is Crohn's Disease Again?
Also known as an Inflammatory Bowel Disease (IBD), Crohn’s disease involves inflammation of the digestive, a.k.a. gastrointestinal (GI), tract. It usually strikes in the small or large intestine and is triggered by your immune system’s white blood cells attacking the body’s healthy tissue. The result: Inflammation, ulceration, and tissue swelling that limits the intestine’s ability to process food, absorb nutrition, and eliminate waste. If you’re doing battle with this disease, abdominal pain, diarrhea, and unwanted weight loss are all too familiar. Crohn’s affects the same number of men and women, most frequently between the ages of 15 and 30, and again in your 50s and 60s.
To better spot the symptoms of Crohn’s disease, it helps to have a crash course on the digestive system. The digestive system consists of the gastrointestinal tract—also called the GI tract or digestive tract—plus three other organs that help the digestive process: the liver, pancreas, and gallbladder.
The GI tract is made up of hollow organs so that food and liquid can travel through them, beginning in your mouth and ending at the anus. Fun fact: If you were to take these twisting and turning tube-like organs out of the body of an average adult, they would be about 30 feet long.
The whole process of food moving through the GI tract is known as peristalsis. Here’s how it works:
When you eat or drink something, it travels from the mouth down through the esophagus in your chest to your stomach, where it gets mixed with digestive juices.
From there it goes to the small intestine where most of the nutrients are absorbed.
Next stop is the large intestine, also known as the colon, which absorbs the excess water and salt from waste material. The colon then converts the leftover solid waste to stool and pushes it out via the rectum and the anus.
This process is made possible by muscles throughout these organs that physically propel the food through the system: The muscles behind the food contract and push it down, while the muscles below relax and allow the food to move on to the next organ. Which is pretty amazing—as long as it’s all working properly.
What Happens If I Have Crohn's?
In people with Crohn’s, that amazing set-up of food moving seamlessly through your body hits some turbulent air. Chances are, things will start to go awry slowly, then amp up over time.
Regular bowel movements start to become unpredictable, eating starts to cause cramping, stool becomes more runny. It’s easy to blame these issues on spicy food, overindulging, or a touch of a stomach bug. But eventually you can’t ignore the signs any longer—it’s a life-altering illness.
Any part of your digestive tract can be affected with inflammation due to Crohn’s, from the mouth to the anus, and symptoms can range from mild to moderate to severe. Foods that one patient can tolerate are a nightmare for another. All this makes Crohn’s disease a unique experience for every person who has it, which can make it difficult to diagnose and tricky to treat.
What Are Some Specific Signs of Crohn's?
When inflammation occurs, the organs in your digestive tract have trouble performing their primary functions, including the absorption of water, which is why diarrhea is so common.
That’s hardly the only symptom, however, as you’ve no doubt discovered. In addition to persistent diarrhea, Crohn’s disease can cause other symptoms related to the GI tract, including:
Urgent need to move your bowels
Sensation of incomplete evacuation
Upper GI symptoms, such as chest pain, heartburn, and difficulty swallowing
As if that’s not bad enough, Crohn’s disease can also cause more general symptoms, including:
Loss of appetite
Loss of your menstrual cycle
Types of Crohn's Disease
The symptoms you’ll experience with Crohn’s depend on the type you have, which is officially determined by the part of your digestive tract that is affected. Here’s a rundown of the five types of Crohn’s:
Ileocolitis: This is the most common form of Crohn’s disease, affecting the end of the small intestine (known as the terminal ileum) and the beginning of the colon. Symptoms include diarrhea and cramping, pain in the middle or lower right abdomen, and significant weight loss.
Ileitis: Also common, this form affects only the small intestine. The symptoms are the same as ileocolitis.
Gastroduodenal Crohn’s Disease: The stomach and the beginning of the small intestine, known as the duodenum, are affected in this type. Symptoms include nausea, vomiting, loss of appetite, and 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. Symptoms include abdominal pain and cramps following meals and diarrhea.
Crohn’s Colitis: This type affects only the colon and causes diarrhea, rectal bleeding, and complications like abscesses, fistulas, and ulcers around the anus. Skin lesions and joint pain are also more common with this form.
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Additional Symptoms and Complications
As unpredictable as Crohn’s can be, there are some recognizable patterns.
Early on, most people will have an inflammatory pattern known as luminal Crohn’s disease, where inflammation starts to cause changes in the lining or wall of the intestine. During this stage, about 55 percent of people are symptom-free. Another 15 percent will have mild symptoms, while 30 percent will have higher disease activity and more symptoms.
Eventually, many people progress from luminal disease to one of two other more challenging patterns—fibrostenosing (also called stricturing) Crohn’s disease and penetrating (also called fistulizing or perforating) Crohn’s disease. The complications from these disease patterns can be inside and outside the GI tract. Let’s take a look at some of those possibilities.
Inside the GI tract
Strictures: Fibrostenosing Crohn’s disease is characterized by intestinal scarring that leads to the narrowing of a section of intestine and potentially an intestinal blockage.
Fistulas: In penetrating Crohn’s disease, ulcers develop on the wall of the intestine and cause a tunnel (fistula) to another part of the intestine, the skin, or another organ.
Abscess: This tender area is filled with pus and can develop in the abdomen, pelvis, or around the anus.
Perforated bowel: Chronic inflammation of the intestine may weaken the wall to such an extent that a hole develops.
Malabsorption and malnutrition: Inability to properly absorb nutrients can lead to deficiencies of vitamins and minerals.
Outside the GI Tract
For reasons not entirely understood, some people develop symptoms related to Crohn’s that affect other parts of the body, especially skin and bones. These extraintestinal complications include:
Eye redness, pain, and itchiness
Swollen, painful joints
Sensitive skin (tender bumps, painful ulcerations, and other rashes)
Rare liver complications
Additionally, in children who have Crohn’s disease, loss of appetite and malabsorption can cause failure to gain weight and grow, leading to a delay in the onset of puberty.
Coping With Flares
Like other immune-related illnesses, Crohn’s disease is characterized by periods of active disease and symptoms, known as flares, and times of remission when little to no symptoms are present. After diagnosis—which usually occurs as the result of a flare—your GI doctor will work with you to bring your flare under control, get you into remission, and keep you that way for as long as possible.
Thanks to new treatments, the outlook is becoming more promising: About 50 percent of patients will have mild disease or be in remission for five years, while 35 percent will have one or two relapses, and around 11 percent will have chronically active levels of the disease.
If you have Crohn’s, you’ll probably need to be on medication at all times, even when no symptoms are present. When meds aren’t taken as directed, it increases the odds of a flare. If you’re taking your medications as prescribed and still experience a flare, talk with your doctor—the dosage, frequency, or type of drug may need to be changed.
Flares may also occur if you smoke tobacco; take antibiotics, which alter the balance of intestinal bacteria; take non-steroidal anti-inflammatories (NSAIDs) like aspirin, ibuprofen, and naproxen, which can cause inflammation in the bowel; or you’re under stress. When a flare occurs, how you manage it can make all the difference. Follow these coping strategies:
Adjust your diet. Avoid spicy foods, fatty foods, alcohol, raw produce, milk and milk products, carbonated beverages, coffee and tea, and sugary foods. Do eat: Yogurt, rice, and bananas.
Relieve your stress. Mindfulness practices like meditation, deep-breathing, and yoga may help, as can joining a support group online or in your community. Exercise produces mood-boosting endorphins and you don’t need to go hard to reap the benefits.
Manage your fatigue. Don’t try to power through—your body needs rest. Take naps as needed and try to arrange to work at home if necessary. Utilizing the Family and Medical Leave Act may be an option if you need more extended time off. Most GI doctors are happy to provide a letter for your employer—ask if they don’t offer.
Plan your itinerary. If you’re going out, learn where available restrooms are located beforehand. Symptoms may be worse at certain times of day (such as first thing in the morning, or right after lunch or dinner), so work around those patterns.
Get carded. When you join the Crohn's and Colitis Foundation, you’ll receive an “I can’t wait” card to use in situations where there is no public restroom so that you can gain access to a staff bathroom.
Put together an emergency kit. Pack a change of underwear, pants, wipes, toilet tissue, panty liners, deodorizers, and hand sanitizer in a tote or backpack. You may never need to use them, but knowing you have the option can reduce anxiety over a potential accident.
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I’ve been having issues with diarrhea. Could it be Crohn’s?
Diarrhea is one symptom of Crohn’s, and it typically occurs during a flare. It is often accompanied by other symptoms, including stomach pain, rectal bleeding, an urgent need to poop, heartburn, and difficulty swallowing. If you’re concerned, it’s always best to see your doctor.
How can I ease a flare?
Thanks to new treatments, many people can go for several years without experiencing a flare. When a flare does occur, try coping strategies such as avoiding spicy and fatty foods, practicing stress-relieving techniques, managing fatigue, and putting together an emergency kit in case you have an accident while you are away from home.
Am I going to be able to keep working?
In many cases, yes. People with Crohn’s disease often experience long periods—from months to years—when they have mild symptoms to none at all. Going to work during a flare can be challenging so talk to your employer about your symptoms. If bathroom access is an issue, try negotiating some work-at-home time, or utilize the Family and Medical Leave Act for more extended time off.
When should I seek medical help?
After you’ve been diagnosed, you should contact your doctor at the first signs of a flare, which may include abdominal pain, diarrhea, night sweats, difficulty sleeping, and unexplained fever. Head to the ER if you experience severe abdominal pain for more than an hour, significant rectal bleeding, persistent vomiting and the stopping of bowel movements, or a high temperature.