An estimated more than 1 million Americans have ulcerative colitis or Crohn’s disease, the two most common forms of inflammatory bowel disease (IBD). These conditions, which can be painful and debilitating, cause chronic inflammation of the digestive tract.
Ulcerative colitis and Crohn’s disease are very similar so similar, in fact, that they’re often mistaken for one another. Both inflame the lining of your digestive tract, and both can cause severe bouts of watery diarrhea and abdominal pain. But Crohn’s disease can occur anywhere in your digestive tract, often spreading deep into the layers of affected tissues. Ulcerative colitis, on the other hand, usually affects only the innermost lining (mucosa) of your large intestine (colon) and rectum.
Ten to 15 people out of every 100,000 in the United States develop ulcerative colitis, while about seven in 100,000 get Crohn’s disease. No one knows exactly what causes these diseases, although your immune response and certain genetic and environmental factors may play a role.
There’s no known medical cure for either ulcerative colitis or Crohn’s disease. However, therapies are available that may dramatically reduce your signs and symptoms and even bring about long-term remission.
Ulcerative colitis and Crohn’s disease share many common symptoms. These signs and symptoms, which may develop gradually or come on suddenly, include:
Inflammation causes cells in the affected areas of your intestine to secrete large amounts of water and salt. Because normal intestinal absorption is impaired, your colon can’t absorb this excess fluid, and you develop diarrhea. In addition, your intestines may contract more than normal, which also can contribute to loose stools.
The walls of your intestines may become inflamed and swollen and eventually may thicken with scar tissue. This blocks the movement of intestinal tract contents through your digestive tract and may cause pain, cramping, or vomiting.
Food moving through your digestive tract can cause inflamed tissue to bleed. But your intestines may also bleed on their own. You might notice bright red blood in the toilet bowl or darker blood mixed with your stool. You can also have bleeding you don’t see (occult blood).
Sometimes, abdominal pain and cramping and the inflammatory reaction in the wall of your bowel may interfere with your ability or desire to eat.
This sign is common in severe cases of IBD.
Ulcerative colitis and Crohn’s disease also differ in several key respects. Although Crohn’s disease often affects the lower part of the small intestine (ileum) or the colon, it can flare up anywhere in the digestive tract from the mouth to the anus. It usually consists of inflammation that may include large ulcers extending deep into the intestinal wall. Inflammation can appear in several places simultaneously, with areas of healthy tissue in between.
If you have ulcerative colitis, you’ll likely have inflammation only in the innermost lining of your colon and rectum. The affected areas will be continuous, with no patches of normal tissue. You may also develop small bleeding ulcers.
Signs and symptoms of both diseases may range from mild to severe. If you have a mild case of Crohn’s disease, you’ll likely have some abdominal discomfort and your stools may be loose or more frequent than usual. But if your case is severe, you may have incapacitating abdominal discomfort and you may have bowel movements so frequently that it interrupts your daytime activities and your sleep. You may also experience weight loss, fever, and other complications.
Signs and symptoms of mild ulcerative colitis include an urgent need to move the bowels, even when sleeping, more frequent stools, loose or liquid stools, and blood in your bowel movements. In more severe cases, you may have the signs and symptoms above as well as fever, weight loss, a poor energy level, and other signs outside the gastrointestinal tract, such as arthritis.
In general, though, the course of IBD varies greatly. You may remain completely without signs and symptoms after the initial one or two episodes of the disease. Or you may have recurrent episodes of abdominal pain, diarrhea, and sometimes fever or bleeding.
No one is quite sure what causes IBD, although there’s a consensus as to what doesn’t cause it. Researchers no longer believe that stress is the main culprit, although stress can often aggravate symptoms. Instead, current thinking focuses on the following possibilities:
Some scientists think an unknown virus or bacterium may cause IBD. The digestive tract becomes inflamed when the body’s immune system tries to fight off the invading microorganism. It’s also possible that inflammation may stem from the virus or bacterium itself.
About 20 percent of people with ulcerative colitis or Crohn’s have a parent, sibling, or child who also has the disease. Scientists are searching for a gene or genes that might make you susceptible to IBD.
Because IBD occurs more often among people living in cities and industrial nations, it’s possible that environmental factors, including a diet high in fat or refined foods, may play a role.
IBD affects about the same number of women and men. Risk factors may include:
Crohn’s disease and ulcerative colitis can strike at any age, but you’re most likely to develop IBD when you’re young. Most people are diagnosed between the ages of 15 and 35.
Although whites have the highest risk of the disease, it can strike any ethnic group. If you’re Jewish and of European descent, you’re four to five times more likely to have IBD.
You’re at higher risk if you have a close relative, such as a parent, sibling, or child, with the disease. If your brother or sister has IBD, your risk of developing the disease is 30 times higher than the general population.
If you live in an urban area or in an industrialized country, you’re more likely to develop either Crohn’s disease or ulcerative colitis.
Your doctor will likely diagnose IBD only after ruling out other possible causes for your symptoms, including irritable bowel syndrome (IBS), diverticulitis, and colorectal cancer. To help confirm a diagnosis of ulcerative colitis or Crohn’s disease, you may have one or more of the following tests and procedures:
Your doctor may suggest blood tests to check for anemia or signs of infection. Two newer tests that look for the presence of certain antibodies can sometimes help diagnose inflammatory bowel disease, but these tests aren’t 100 percent accurate.
This diagnostic test allows your doctor to evaluate your entire large intestine with an X-ray. Barium, a contrast dye, is placed into your bowel in an enema form. Sometimes, air also is added. The barium fills and coats the lining of the bowel, creating a clear silhouette of your rectum, colon, and a portion of your small intestine. This test typically takes about 30 minutes and can be somewhat uncomfortable.
In this procedure, your doctor uses a slender, flexible, lighted tube to examine the sigmoid, the last 2 feet of your colon. The test usually just takes a few minutes. It’s somewhat uncomfortable, and there’s a slight risk of perforating the colon wall. It may also miss problems higher up in your colon or in your small intestine.
This is the most sensitive test for diagnosing Crohn’s disease or ulcerative colitis. It allows your doctor to view your entire colon using a thin, flexible, lighted tube with an attached camera. During the procedure, your doctor can also take small samples of tissue (biopsy) for laboratory analysis.
Sometimes a tissue sample can help confirm a diagnosis. If there are clusters of inflammatory cells called granulomas, for instance, it’s likely you have Crohn’s disease since granulomas don’t occur with ulcerative colitis. You may be given a mild sedative to make you more comfortable. Risks of this procedure include perforation of the colon wall and bleeding. Occasionally, Crohn’s disease affects only the small bowel and not the colon. If your doctor suspects this, he or she may perform a small bowel barium X-ray instead of a colonoscopy.
Both Crohn’s disease and ulcerative colitis can cause a number of complications, some of which can be serious.
Crohn’s disease may result in your developing one or more of the following:
Crohn’s disease affects the entire thickness of the intestinal wall. Over time, parts of the bowel can thicken and narrow, which may block the flow of digestive contents through the small intestine. Some cases require surgery to remove the diseased portion of the bowel.
Chronic inflammation can lead to open sores (ulcers) anywhere in the digestive tract, including the mouth or anus. It’s possible to have many ulcers scattered throughout the digestive tract, but many Crohn’s-related ulcers form in the lower part of the small intestine (terminal ileum) or in the colon or rectum.
Sometimes ulcers can extend completely through the intestinal wall creating a fistula, an abnormal connection between different parts of the intestine or the intestine and the skin. When internal fistulas develop, food may bypass areas of the bowel that are necessary for absorption. External fistulas can cause continuous drainage of bowel contents to your skin. In some cases, fistulas may become infected (abscess), a problem that can be life-threatening if left untreated.
This is a crack, or cleft, in the anus or in the skin around the anus where infections can occur. It’s often associated with painful bowel movements.
Diarrhea, abdominal pain, and cramping may make it difficult for you to eat or for your intestine to absorb enough nutrients to keep you well-nourished.
Crohn’s disease may cause problems in other parts of the body as well as in the intestines. Among these are arthritis, inflammation of the eyes or skin, kidney stones, gallstones, and, occasionally, inflammation of the bile ducts.
No one knows exactly what causes these complications. Some researchers believe that the same immune system response that produces inflammation in your intestines may cause inflammation in other parts of your body.
The most serious acute complication of ulcerative colitis is toxic megacolon. This occurs when your colon becomes paralyzed, preventing you from having a bowel movement or passing gas. Signs and symptoms include abdominal pain and swelling, fever, and weakness. You might also become disoriented or groggy. If toxic megacolon isn’t treated, your colon may rupture, causing peritonitis, a life-threatening medical condition requiring emergency surgery. Fortunately, this complication is rare. Having ulcerative colitis also makes it more likely you’ll develop liver disease, as well as skin, joint, and eye inflammation.
Finally, both ulcerative colitis and Crohn’s disease increase your risk of colon cancer. Despite this increased risk, however, more than 90 percent of people with IBD don’t get colon cancer.
If you have ulcerative colitis, your risk is greatest if you’ve had the disease for at least eight to 10 years and if it has spread through your entire colon. You’re less likely to develop cancer if only a small part of your colon is diseased. The same is believed to be true for Crohn’s disease. The longer you’ve had the disease and the larger the area affected, the greater your risk of colon cancer.
Nevertheless, if you’ve had any type of inflammatory bowel disease for eight or more years, see your gastroenterologist at least once a year. He or she will likely recommend that you have regular colonoscopies.
The goal of medical treatment is to reduce the inflammation that triggers signs and symptoms. In the best cases, this may lead not only to symptom relief but also to long-term remission. Treatment for IBD usually involves either drug therapy or surgery.
Doctors use several categories of drugs that control inflammation in different ways. But drugs that work well for some people may not work for others, so it may take time to find a medication that helps you. In addition, because some drugs have serious side effects, you’ll need to weigh the benefits and risks of any treatment.
Anti-inflammatory drugs are often the first step in the treatment of inflammatory bowel disease. They include:
These medications tend to have fewer side effects than sulfasalazine. You take them in tablet form or use them rectally in the form of enemas or suppositories, depending on the area of your colon affected by IBD. Mesalamine enemas can relieve signs and symptoms in more than 80 percent of people with ulcerative colitis in the lower colon and rectum.
This is another formulation of mesalamine, the compound found in drugs such as Asacol and Rowasa. Colazal delivers anti-inflammatory medication directly to the colon. The drug is similar to sulfasalazine, but uses a less toxic carrier and may produce fewer side effects. Twenty percent of people with ulcerative colitis using this medication experience remission lasting longer than 12 weeks.
Steroids can help reduce inflammation anywhere in your body, but they have numerous side effects, including a puffy face, excessive facial hair, night sweats, insomnia, and hyperactivity. More serious side effects include high blood pressure, diabetes, osteoporosis, cataracts, and increased susceptibility to infections. Long-term use of these drugs in children can cause stunted growth. Also, these medications don’t work in many people with active ulcerative colitis or Crohn’s. Doctors generally use corticosteroids only if you have moderate to severe IBD that doesn’t respond to other treatments. A newer type of corticosteroid, budesonide (Entocort EC), is metabolized faster than traditional steroids and appears to produce fewer side effects. As many as 70 percent of people taking it for eight weeks will have fewer signs and symptoms of IBD.
These drugs also reduce inflammation, but they target your immune system rather than treating inflammation itself. Because these drugs can be effective in treating IBD, scientists theorize that damage to digestive tissues is caused by your body’s immune response to an invading virus or bacteria or even to your own tissue. By suppressing this response, inflammation is also reduced. Immunosuppressant drugs include:
These are the most widely used immunosuppressants for the treatment of inflammatory bowel disease. Although it can take up to three months for these medications to begin to work, they help reduce signs and symptoms of IBD in general and can heal fistulas from Crohn’s disease.
This drug is specifically for people with Crohn’s disease. It works by neutralizing a protein produced by your immune system known as tumor necrosis factor (TNF). Infliximab finds TNF in your bloodstream and removes it before it causes inflammation in your intestines. But Remicade can also increase the risk of serious infection, such as tuberculosis. If you’re currently taking Remicade, talk to your doctor about this risk.
This drug, normally used to treat cancer, is sometimes used for people with IBD who don’t respond well to other medications. It starts working in about eight to 10 weeks. Short-term side effects include nausea, fatigue, and diarrhea. Long-term use can lead to scarring of the liver. Women should not become pregnant while taking methotrexate.
This potent drug is normally reserved for people who don’t respond well to other medications. It’s used to heal fistulas from Crohn’s disease and may also improve symptoms of ulcerative colitis. Cyclosporine begins working in one to two weeks but has the potential for serious side effects, such as kidney damage, high blood pressure, and an increased risk of infection.
Although antibiotics generally have no effect on ulcerative colitis, they can heal fistulas and abscesses in people with Crohn’s disease. Typical antibiotics include:
Once the most commonly used antibiotic for Crohn’s disease, metronidazole can sometimes cause serious side effects, including numbness and tingling in your hands and feet and, occasionally, muscle pain or weakness. Other side effects include nausea, headache, dizziness, and loss of appetite.
In clinical trials, nicotine skin patches the same kind smokers use seem to provide short-term relief from flare-ups of ulcerative colitis. In fact, the patches appear to eliminate symptoms in four out of 10 people. How nicotine patches work isn’t exactly clear, and no one should take up smoking as a treatment for ulcerative colitis. The risks from smoking far outweigh any potential benefits. Smoking is especially harmful to people with Crohn’s disease.
Other medications addition to controlling inflammation, some medications may help relieve your signs and symptoms. Depending on how the severity of your IBS, your doctor may recommend one or more of the following:
A fiber supplement such as psyllium powder (Metamucil) or methylcellulose (Citrucel) can help relieve signs and symptoms of mild to moderate diarrhea by bulking up your stool. For more severe diarrhea, loperamide (Imodium) may be effective. Use narcotics with great caution, however, because they increase the risk of toxic megacolon.
In some cases, swelling may cause your intestines to narrow, leading to constipation. Talk to your doctor before taking any laxatives, because even those sold over the counter may be too harsh for your system.
If you have chronic intestinal bleeding, you may develop iron deficiency anemia. Taking iron supplements may help restore your iron levels to normal and reduce this type of anemia once your bleeding has stopped or diminished.
Vitamin B-12 helps prevent anemia, promotes normal growth and development, and is essential for proper nerve function. It’s absorbed in the terminal ileum, a part of the small intestine often affected by Crohn’s disease. If inflammation of your terminal ileum is interfering with your ability to absorb this vitamin, you may need monthly B-12 shots for life. You’ll also need lifelong B-12 injections if your terminal ileum has been removed during surgery.
Several new treatments that one day may effectively relieve symptoms with fewer side effects are in various stages of research.
One being studied is the use of human growth hormone (HGH) in combination with a high-protein diet to treat Crohn’s disease. In a clinical trial, people treated with HGH saw a reduction in their signs and symptoms after four months. Side effects, which included swelling and headaches, disappeared after about four weeks. More research is needed to confirm these findings and to determine the long-term benefits and risks of HGH therapy for people with Crohn’s disease.
Drugs that block a protein produced by your immune system known as tumor necrosis factor (TNF) also are being tested for the treatment of Crohn’s disease. These include CDP-571, etanercept (Enbrel) and thalidomide. None are specifically approved for use in Crohn’s disease.
Researchers are also testing synthetic versions of naturally occurring proteins, such as interleukin-10, for the treatment of Crohn’s disease. Testing also continues on the common blood-thinning medication, heparin. It may help control inflammation in ulcerative colitis. One of the first gene-based drugs to emerge as a result of the latest genetic research may be keratinocyte growth factor-2, a medication aimed at stimulating the growth of healthy tissue in people with ulcerative colitis and chronic wounds such as bed sores. Results in animal studies looked promising, but the results of an initial human trial designed to test the safety of the medication were disappointing. The study did find that the drug was well-tolerated, so a higher dose may prove more effective.
If diet and lifestyle changes, drug therapy, or other treatments don’t relieve your signs and symptoms, your doctor may recommend surgery to remove a damaged portion of your digestive tract or close fistulas, or remove scar tissue.
In cases of Crohn’s disease, surgery can buy years of remission at best. At the least, it may provide a temporary improvement in your symptoms. During surgery, your surgeon removes a damaged portion of your digestive tract and then reconnects the healthy sections in a procedure known as resection. He or she may also close fistulas or drain abscesses. One of the most common surgeries for Crohn’s is strictureplasty, a procedure that widens a segment of the intestine that has become too narrow. Laparoscopic surgery using small incisions can lead to improved outcomes and shorter hospital stays for some people with Crohn’s disease.
Even so, the benefits of surgery for Crohn’s are only temporary. The disease often recurs, frequently near the reconnected tissue or elsewhere in the digestive tract. Nearly three of four people with Crohn’s disease eventually need some type of surgery. Of those, about half will need a second procedure and another 10 percent to 30 percent may require a third operation.
On the other hand, if you have ulcerative colitis, surgery can often eliminate the disease. But that usually means removing the entire colon and rectum (proctocolectomy). In the past, after this surgery, you would wear a small bag over an opening in your abdomen to collect waste. But a procedure that has been used for about 20 years ileoanal anastomosis eliminates the need to wear a bag. Instead, your surgeon constructs a pouch from the end of your small intestine. The pouch is then attached directly to your anus. This allows you to expel waste normally, although you may have as many as five to seven watery bowel movements a day because you no longer have your colon to absorb water. Between 25 percent and 40 percent of people with ulcerative colitis will eventually need surgery.
Crohn’s disease and ulcerative colitis don’t just affect you physically they take an emotional toll as well. If signs and symptoms are severe, your life may revolve around a constant need to run to the toilet. In some cases, you may barely be able to leave the house. When you do, you might worry about an accident, and this anxiety only makes your symptoms worse.
Even if your symptoms are mild, gas and abdominal pain can make it difficult to be out in public. You may also feel hampered by dietary restrictions or embarrassed by the nature of your disease. All of these factors isolation, embarrassment, and anxiety can severely alter your life. Sometimes they may lead to depression.
One of the best ways to feel more in control is to find out as much as possible about IBD. In addition to talking to your doctor, look for information in books and on the Internet. You might find it especially helpful to talk to people who share your condition. Organizations such as the Crohn’s & Colitis Foundation of America (CCFA) have chapters set up across the country. Your doctor, nurse, or dietitian can locate the chapter nearest you, or you can contact the organization directly. In many parts of the country, local newspapers also publish the times and locations of various support group meetings. If possible, take your family with you to meetings. The more they know about your disease, the better able they’ll be to understand what you’re going through.
Although support groups aren’t for everyone, they can provide valuable information about your condition as well as emotional support. Group members frequently know about the latest medical treatments or integrative therapies. You may also find it reassuring to be among people who understand what you’re going through.
Some people find it helpful to consult a psychologist or psychiatrist who’s familiar with inflammatory bowel disease and the emotional difficulties it can cause. Although living with ulcerative colitis or Crohn’s disease can be discouraging, the outlook is brighter than it was even just a few years ago.
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