What Is It?
Crohn's disease is a chronic inflammatory bowel disease that can affect any part of your digestive system, even your mouth.
The disease is typically diagnosed in adolescence and young adulthood, but it is becoming more common in children. Overall, about 700,000 people in the United States may have Crohn's disease, though some of those cases are undiagnosed. While there is no cure for Crohn's, it can be managed with medication, although surgery is often required.
Symptoms of Crohn's include diarrhea, sometimes at night; abdominal pain; bowel obstruction (when something partially or fully blocks the intestines); weight loss; fever; night sweats; and fatigue. The pain tends to occur in the lower right part of your abdomen or near your belly button. The pain might improve with a bowel movement. You may also see blood in your stool.
Many people live with Crohn's for years before receiving the correct diagnosis.
Crohn's can affect every part of the digestive system and can affect more than one part at the same time. Specifically:
- Ileocolitis. This is the most common form of the disease. It affects the ileum (the last part of the small intestine) and some portion of the large intestine, or colon, which goes from the end of the ileum to the anus. About half of people with Crohn's will have disease in these parts of their digestive system.
- Crohn's disease of the small intestine. The small intestine is affected in about 80 percent of people with Crohn's. Sometimes this coexists with colon involvement (see above) or it can be the small intestine alone. The primary symptoms are weight loss and nutritional deficiencies because your intestine doesn't absorb nutrients from food. Other symptoms include diarrhea, abdominal pain, lack of appetite and sometimes nausea and vomiting.
- Colonic Crohn's disease. This form of the disease affects about 20 percent of patients and is limited to the colon. It is often confused with ulcerative colitis, another inflammatory bowel disease. Symptoms include bloody diarrhea with mucus; cramping abdominal pain; and an urgent need to have a bowel movement.
- Perianal disease. About a third of people with Crohn's will develop perianal disease, in which the disease affects the anus and surrounding area. You may have abscesses or fistula on this part of your body, as well as skin tags, hemorrhoids, painful ulcers in the anus or rectum, and strictures, an abnormal narrowing of the rectum or anus. Symptoms include bright red blood in your stool or bleeding from your rectum, and pain, redness and/or discharge in the anal area. In some women, the fistulas may affect the vagina, and they could have the sensation of air or liquid coming out of the vagina.
Other less common manifestations of Crohn's disease include symptoms in their mouth, esophagus or other digestive areas.
A major complication of Crohn's is an obstruction in your small intestine or colon that prevents digested material from passing through. Symptoms of an obstruction include bloating after meals, cramping pain and loud growling from your stomach.
Another common complication is development of a fistula, literally a hole between two organs. Symptoms depend on where the fistula forms, but include vomiting, gas when you urinate (you'll see bubbles in your urine), a grainy vaginal discharge and recurrent urinary tract infections. Fistulas can be managed with medication but sometimes require surgery to repair.
Sometimes the inflammation that underlies Crohn's can affect other parts of your body, causing painful joints; ulcers in your mouth or on your skin; a tender, red rash on your shins; and eye inflammation. You also have a higher risk of blood clots, kidney stones, loss of bone density, anemia and vitamin B12 deficiency.
People with Crohn's also have a higher risk of developing colon cancer and liver disease.
No one knows what causes Crohn's, but experts suspect it is related to a combination of abnormalities, environmental factors, genetic causes and intestinal bacteria or viruses in the system. Researchers have identified several genes connected with the disease and know that it tends to run in families. The disease is most prevalent in people with Eastern European heritage, and there have been recently been an increased number of cases in African Americans.
The goal of treatment for Crohn's is to prevent acute flares or exacerbations and keep you in remission. About 10 percent to 20 percent of people with Crohn's have a remission after the initial diagnosis.
To diagnose Crohn's disease, your doctor will order a series of tests, ask you a lot of questions about your symptoms and examine you thoroughly. You should share any family history of gastrointestinal problems or inflammatory bowel diseases, including Crohn's and ulcerative colitis, because Crohn's is often hereditary.
Tests used to diagnose Crohn's disease include:
- Blood tests. The doctor will likely order a complete blood count to check for anemia and high levels of white blood cells, which could signify infection and/or inflammation. Blood tests can also evaluate the health of your kidneys and liver and assess levels of inflammation.
- Colonoscopy. This procedure lets your doctor perform a detailed examination of the inside of your entire colon, including your rectum. A thin, lighted flexible tube with a small camera attached to the end is inserted through your anus to look for ulcerations and inflammation. If needed, the doctor can take tissue samples and correct certain problems using the same tube. You need to fast for at least 24 hours before a colonoscopy and take a special liquid to completely empty your bowel. The procedure is typically performed under sedation or anesthesia.
- Endoscopy. This procedure enables the doctor to see the upper digestive tract, including your esophagus, stomach and upper part of the small intestine (duodenum). The doctor inserts a small, flexible tube with a light and a lens on the end through your mouth. During the procedure, the doctor can take tissue samples and pictures. The procedure is done while you are anesthetized or heavily sedated, so you shouldn't feel any pain or discomfort.
- Ultrasound. An ultrasound uses sound waves to provide an image of the inside of your abdominal area. You may have an external ultrasound or an endoscopic ultrasound, in which the ultrasound wand is inserted through the rectum, to look for any strictures. This may be used to look at the gall bladder, kidneys and pancreas.
- Imaging tests. In some instances, your doctor may order an MRI or a CT scan to look at the intestine and the complications such as abscesses or fistulas. An MRI uses magnets and a CT scan uses radiation to provide a three-dimensional image of your organs.
- Antibody tests. Because some immune system dysfunction is involved with Crohn's, your doctor may order antibody tests to differentiate your disease from ulcerative colitis, another inflammatory bowel disease.
- Barium enema. In this procedure, a tube is inserted into your rectum and air and barium, a radio opaque liquid, are inserted into your bowel. X-rays are then taken to identify any abnormalities.
- Upper gastrointestinal series. An upper GI series requires you to drink a contrast agent. Then fluoroscopic imaging is used to examine your esophagus, stomach and duodenum.
- Small bowel follow-through. A small bowel follow looks at the distal portions of the small bowel, the jejunum and ileum. It helps evaluate abdominal pain and diarrhea. The small bowel series often is done immediately after an upper GI exam, though it may also be done separately. You will drink some contrast, and radiographs of you abdomen will be obtained every 20 or 30 minutes. The test can take several hours
- Capsule endoscopy. This procedure, also known as wireless capsule endoscopy or small bowel endoscopy, uses a tiny wireless camera to take pictures that help doctors see inside your small intestine. The camera fits inside a vitamin-sized capsule that you swallow. As the camera travels through your digestive tract, it takes pictures that are transmitted to a recorder. These pictures can reveal areas of inflammation in the small intestine that can help your doctor Crohn's.
After diagnosing you, your doctor will stage your disease as a way of assessing its severity. Staging provides important information for developing a treatment plan.
The primary goal of Crohn's treatment is to manage acute flares, bring you into remission and maintain remission over the long term without steroids.
A healthy diet and regular exercise can help keep the symptoms of Crohn's in check. Work with your health care team to maintain a well-balanced diet that is low in saturated fats and high in foods containing omega-3 fatty acids. Because everyone with Crohn's reacts to foods differently, there is no particular diet that has been proven effective. In general, follow a healthy, nutritious diet and avoid foods that seem to trigger symptoms or cause them to worsen.
Low-intensity workouts, such as walking, also have been shown to improve Crohn's symptoms. Exercise reduces the stress that triggers flare-ups and can help prevent depression, which can occur in people with chronic conditions like Crohn's.
Your health care team will work with you to improve any pain and will try to prevent surgery. Studies find that the disease tends to moderate after the first year of diagnosis, with about half of people with Crohn's in remission at any given time.
Treatment depends on the severity of your disease, with four levels of severity possible:
- Asymptomatic remission, in which you have no symptoms after medical or surgical treatment. However, if you have to take steroids to remain symptom free, you're not considered to be in remission.
- Mild-to-moderate Crohn's, in which you can eat normally without major gastrointestinal problems or weight loss but still have some mild symptoms.
- Moderate-to-severe Crohn's, in which you have symptoms such as fever, weight loss, abdominal pain and tenderness, nausea and vomiting and loss of appetite.
- Severe fulminant disease, in which you have significant symptoms even while on steroids or biologic drugs or when you have an abscess, obstruction or other severe symptoms.
Treatment is often given in a "step-up" manner starting with drugs like 5-aminosalicylic acid (5-ASA) and antibiotics that have few side effects but also fewer beneficial effects, moving on to steroids, immune modulators and biologic drugs.
However, there's some evidence that using a more aggressive approach earlier with immune modulators and biologic drugs leads to a faster remission, higher remission rate and improved healing of the intestinal lining than conventional therapy.
The bottom line is that you and your health care team must work together to find the right treatment approach for you, balancing the benefits of the drugs against their side effects, your preference for oral, injected or infused medications and the affects of the treatment and the disease on your quality of life.
Medications used to treat Crohn's Disease
Aminosalicylates (5-ASA). These drugs reduce inflammation and provide some antioxidant benefits in the small bowel and colon. They are not specifically approved by the United States Food and Drug Administration (FDA) for the treatment of Crohn's, but they can help decrease inflammation in the lining of the GI tract. Therefore, they are sometimes prescribed as maintenance therapy to maintain remission. These drugs include oral mesalamine (Asacol, Pentasa), sulfasalazine (Azulfidine), olsalazine (Dipentum) and balsalazide (Colazal). and rectal 5-ASA medications (Canasa and Rowasa). These drugs are most effective in the colon and don't work as well if Crohn's disease is limited to the small intestine. Side effects of these medications include headaches, nausea, fever, rash, hair loss and a risk of kidney and liver damage. Rarely they can cause Crohn's to flare.
Biologic therapies. These drugs are typically given by IV infusion or subcutaneous injection. They work by preventing immune system processes that lead to inflammation and are primarily used in the short-term for a flare or when fistulizing disease hasn't improved with other drugs. The major side effects are an increased risk of infection, lymphoma and the development of antibodies to the drug that make it ineffective. The medications used are infliximab (Remicade), adalimumab (Humira), certolizumab and pegol (Cimzia). Natalizumab (Tysabri) is used when none of these have worked.
Antibiotics. Antibiotics are used to treat mild-to-moderate Crohn's and fistulizing or perianal disease. They are prescribed primarily to change the bacterial balance in your intestines, which can improve the abnormal immune response underlying Crohn's. The most commonly used antibiotics are metronidazole (Flagyl) and ciprofloxacin (Cipro). Side effects are rare but include nausea and abdominal pain.
Antispasmodic/anticholinergic agents. These drugs are prescribed to help with abdominal cramping and pain. They should not be used if there is any possibility you have a bowel obstruction. They include propantheline (Pro-Banthine), dicyclomine (Bentyl) and hyoscyamine (Levsin). The major side effects are constipation, dry mouth, dry skin and reduced sweating.
Antidiarrheal agents. These drugs include loperamide (Imodium), diphenoxylate and atropine (Lomotil) and tincture of opium, all designed to improve diarrhea. Side effects include blurred vision, dry mouth, sedation, nausea, vomiting and abdominal discomfort. You shouldn't take these drugs during a flare because they could cause a serious condition called toxic megacolon.
Probiotics. Probiotics are natural microorganisms that help maintain a favorable balance of good and bad bacteria in your gut. There is some evidence that they can help prevent inflammation and recurrences in people with inflammatory bowel disease.
Corticosteroids. These drugs include prednisone (Deltasone, Orasone), budesonide (Entocort EC) and hydrocortisone (Cortenema, Anusol-HC). They reduce inflammation and are used during a disease flare to return you to remission. They are not used as maintenance therapy because of the risk of serious side effects, which include osteoporosis, delayed wound healing and muscle weakness.
Immune modulators. These drugs, 6-mercaptopurine (Purinethol), azathioprine (Imuran) and methotrexate (Trexall, Rheumatrex), suppress the immune system and enable you to be weaned off corticosteroids. They are also used to treat fistulas. Side effects include an increased risk of infection with azathioprine, and nausea and vomiting with 6-mercaptopurine. Side effects with methotrexate include inflammation of the mouth, gums and tongue, excess uric acid in the blood, diarrhea, loss of appetite, low white blood cell counts and kidney disease.
Tacrolimus (Prograf) is another immune modulator sometimes used in people with Crohn's. This drug interrupts certain immune system processes that contribute to the disease. Because of the risk of significant side effects, however, it is mainly used when other treatments fail. Side effects may include diarrhea, headache, insomnia, abdominal pain, tremor, high blood pressure, nausea and high blood sugar, among others.
Your health care professional will also prescribe nutritional supplements if the disease affects your weight or restricts a child's growth. During an attack, you may need to be fed intravenously to give your intestine time to rest and heal.
Many people with Crohn's will need surgery at some point, usually to remove a severely damaged part of the intestine. Surgery is often recommended when symptoms continue despite high doses of steroids; when complications like abscesses, fistulas and obstructions occur; and when there is significant bleeding or the colon or small intestine is perforated.
The surgeon removes the part of your intestine that is damaged. The most common surgery in Crohn's disease is removal of the end of the small intestine because of a stricture causing a blockage. The two healthy ends of the intestine are reattached. Sometimes, part of the colon needs to be removed and the remaining ends connected. If the colon is severely diseased and/or damaged, it may have to be completely removed, a procedure called a colectomy. In that instance, the surgeon creates an opening to the outside of your body near your abdomen called a stoma. Waste exits through the stoma into a pouch that you empty as needed. Very few people need this to be done.
Surgery may also be recommended for a condition called toxic megacolon, when the colon widens very quickly, usually because of serious infection and/or inflammation. Symptoms include abdominal pain, bloating and tenderness, fever and rapid heart rate. You can go into shock and, unless the condition is treated immediately, could die.
In many instances, the surgeon may be able to operate laparoscopically through small incisions, rather than opening your entire abdomen. There is some evidence that laparoscopic surgery has a lower rate of infection and a lower risk of reoperations than abdominal surgery. Not all surgeons do this. Colorectal surgeons, who specialize in colon surgeries, are more likely to have the training and experience for laparoscopic surgeries.
The most common complication from surgery for Crohn's is the development of adhesions. Adhesions occur when bands of scar tissue in the abdominal cavity get "stuck" to pelvic or abdominal organs, similar to how plastic wrap clings to itself. In some instances, the surgeon may need to go back in to remove the adhesions.
Surgery is not a cure but can relieve complications such as blockage. Surgery is typically used only when complications occur or your symptoms don't respond to any medications in the Crohn's arsenal. Most people need to stay on medication after surgery to prevent the disease from returning.
There is no way to prevent Crohn's because the cause is not known, but there are treatments to prevent acute flares and maintain remission of Crohn's. Medication is the best way to do this, but learning to manage stress and reduce the stress in your life may also help. Stress-management techniques include deep, slow breathing when you're stressed, visualization exercises and meditation.
Exercise and other physical activity can help with stress management, as can simply taking care of yourself with enough sleep and a healthy diet.
Facts to Know
- Crohn's disease is a chronic inflammatory bowel disease that can affect any part of the digestive system.
- Crohn's is typically diagnosed when people are adolescents or in their early 20s, although more children are being diagnosed.
- Crohn's is a chronic disease with no cure. It is managed with medication and surgery.
- Symptoms of Crohn's include diarrhea, fever, abdominal pain, night sweats, weight loss and fatigue.
- The disease affects the small intestine and colon in most people with Crohn's.
- Complications of Crohn's include obstructions, fistula, abscesses and perianal disease.
- The inflammation associated with Crohn's can affect other parts of your body, causing painful joints, mouth or skin ulcers, rashes and eye inflammation.
- Diagnosing Crohn's involves a thorough medical examination, blood tests, imaging studies such as ultrasound, MRI or CT, endoscopy, colonoscopy and barium X-rays.
- Numerous medications are used to treat Crohn's, including aminosalicylates, biologic therapies, antibiotics, antispasmodic/anticholinergic agents, antidiarrheal agents, bile acid sequestrants, probiotics, corticosteroids and immune modulators.
- About three out of four people with Crohn's will need surgery to remove some small intestine or a piece of colon. Surgery is not a cure.
Questions to Ask
Review the following Questions to Ask about Crohn's disease so you're prepared to discuss this important health issue with your health care professional.
- How many cases of Crohn's disease do you treat each month?
- What percentage of your patients do you refer for surgery?
- What is your philosophy regarding medical treatment of Crohn's? Do you prefer the step-up approach or do you start treatment with more powerful drugs?
- How do you handle flares?
- What side effects should I expect from the medication you've recommended?
- How long will it take before I feel better after starting this medication?
- What symptoms and/or side effects should prompt a call to your office?
- Are there any lifestyle changes I can make to prevent recurrences?
- Will I be able to get pregnant and have children?
- Are there any clinical trials you recommend I join?
- What causes Crohn's disease?
We don't know what causes Crohn's, but experts suspect it is related to a combination of abnormalities, environmental factors, genetic causes and intestinal bacteria or viruses in the system. Researchers have identified several genes connected with the disease so far and know that it tends to run in families.
- What are the symptoms of Crohn's disease?
Symptoms of Crohn's include diarrhea, abdominal pain; bowel obstruction (when something partially or fully blocks the intestines), weight loss, fever, night sweats and fatigue. The pain tends to occur in the lower right part of your abdomen or near your belly button. The pain might improve with a bowel movement. You may also see blood in your stool.
- How can I be sure I get the right diagnosis?
To diagnose Crohn's disease, your doctor will order a series of tests, ask you a lot of questions about your symptoms and thoroughly examine you. You should share any family history of gastrointestinal problems or irritable bowel diseases, including Crohn's and ulcerative colitis, since Crohn's is often hereditary. Tests that may be used to diagnose Crohn's disease include blood tests, endoscopy, colonoscopy, ultrasound, imaging tests, antibody tests and a barium enema.
- Is there a cure for Crohn's disease?
Although there is no cure for Crohn's, it can be managed with medication and sometimes surgery.
- What medications are used to treat Crohn's disease?
Medications used to treat Crohn's disease include aminosalicylates (5-ASA) to reduce inflammation and provide some antioxidant benefits in the small bowel; antibiotics; biologic therapies to tamp down the immune system; supportive medications like antispasmodic/anticholinergic agents to help with abdominal cramping and pain; antidiarrheal agents; bile acid sequestrants to help you absorb bile acids properly; probiotics to help maintain a favorable balance of good and bad bacteria in your gut; corticosteroids to reduce inflammation; and immune modulators to suppress the immune system.
- How will I know what medication is best for me?
You and your doctor will work together to find the right medications for your disease based on your symptoms.
- How will I know when I need surgery?
Many people with Crohn's will need surgery at some point, usually to remove a severely damaged part of the intestine. Surgery is often recommended when symptoms continue despite high doses of steroids; when complications like abscesses, fistulas and obstructions occur; and when there is significant bleeding or the colon has become perforated.
- What are the risks of surgery?
The most common complication from surgery for Crohn's is the development of adhesions. Adhesions occur when bands of scar tissue in the abdominal cavity get "stuck" to pelvic or abdominal organs, similar to how plastic wrap clings to itself. In some instances, the surgeon may need to remove the adhesions.
- Is there any way to prevent recurrences?
The goal of treatment is to prevent recurrences. You and your health care team can work together to find the best combination of lifestyle and medical therapies to reduce or prevent the risk of recurrence.
- Reduce and manage stress.
Although there is no significant evidence that stress causes Crohn's disease flares, some people say stress makes their disease worse. Try to find ways to reduce your stress level. For instance, you might consider working fewer hours so that you have time for rest and exercise, cutting back on volunteering or asking your partner and children to help out more around the house. You can also learn techniques to better manage stress, such as meditation, deep breathing exercises and visualization.
- Do not smoke.
Smoking is very bad for people who have Crohn's disease. It makes the disease flare more frequently.
- Get a good night's sleep.
There is some evidence that the quality and amount of sleep you get could have an impact on your disease.
- Prepare for surgery.
Since you have a high risk of needing surgery at some point, make sure you are in the best possible health for the procedure. That means not smoking, since smoking can impact blood flow and affect healing, and maintaining a healthy weight, since obesity can also affect healing and make surgery riskier. Clear your schedule for a few weeks afterward to allow as much time as possible for rest. Clean and take care of errands in advance, and stock up on convenience meals. Don't eat anything heavy or fatty the evening before surgery, follow your doctor's preoperative instructions, leave jewelry and valuables at home and arrive early to fill out forms.