Patients must seek help if they become extremely sick with fever, vomiting, dehydration or severe debility. Severe attacks of ulcerative colitis carry the risk that patients will lose too much blood or more fluids and nutrients than they can make up through eating and drinking. Hospitalization may be required to stabilize the patient and help bring the inflammation under control. Fever and pain can also indicate perforation or toxic megacolon, emergency situations that must be treated immediately. Fever is often masked, however, if the patient is already taking medications for colitis.
Adequate rest and a healthy diet are essential during flare-ups. During attacks, patients run the danger of becoming malnourished and dehydrated due to excessive fluid and nutrient loss through diarrhea. People may also feel nauseated and may not wish to eat. Although it is sometimes hard to force oneself to consume enough food and fluids, doing so is essential in order to maintain overall health.
During flare-ups, doctors recommend eating frequent, small meals that are high in protein and calories and low in fiber. Bland, soft foods and bouillon may be tolerated best. Avoid caffeine, fruit juices, sweets, and alcohol. About 2% of patients are lactose intolerant and should avoid milk products, although dairy foods need not be restricted for everyone. Many people do well with fatty fish, such as salmon, sardines, herring, and mackerel.
A daily multivitamin with iron is recommended. Those on sulfasalazine (a drug used to control inflammation) should also take a folate supplement.
Hot baths can be relaxing and relieve discomfort.
If you feel you need help coping emotionally with colitis, talk with your doctor. People with a chronic illness are prone to depression. Some turn to narcotics, tranquilizers, or alcohol to find relief. Individual counseling, a support group, or anti-depressant medications may be helpful.
Your doctor is the best source of information on the drug treatment choices available to you.
Surgical removal of part or all of the colon (a partial or complete colectomy) is warranted if medications cannot bring severe disease under control. Surgery is rarely needed for ulcerative colitis confined to the rectum and sigmoid colon. However, when intravenous treatment in the hospital can't bring ulcerative colitis under control, patients with extensive disease may have to have all or part of the colon removed. Perforation, irreversible toxic megacolon, or the presence of cancer would be clear indications for a colectomy.
In some cases, a colectomy is also a reasonable preventive measure against colorectal cancer. Some people with extensive disease opt to have their colon removed as a preventive measure against cancer. The risk of cancer increases with the extent and duration of the disease and not necessarily with how active the disease has been over time. Patients who have had extensive ulcerative colitis for many years may choose to remove the colon to reduce their cancer risk, especially if colonoscopy has revealed suspicious areas.
Surgical removal of the entire colon is the only real cure for ulcerative colitis. Whether or not it is worth the drawbacks is a highly individual decision. While removing the colon and creating a colostomy seems like a drastic measure, for those with severe disease, it can bring about significant improvement in health.
A colectomy involves cutting out part of or all of the colon and reattaching the disease-free end of the small intestine through the wall of the abdomen and suturing it to the skin. Feces are then excreted into a disposable bag (ileostomy bag) that the patient attaches on the outside. Another option, known as an ileo-anal pouch, is the creation of an internal pouch from the small intestine, which is attached to the anus. This allows feces to be excreted in a more natural fashion. This method may cause bowel movements to be more frequent than usual and watery. However, probably 90% of UC patients choose the pouch after colectomy.
Most ileostomy systems are well designed these days and should not smell bad or even be noticeable to others. Patients should be able to enjoy an active life that includes swimming and other sports as well as sexual relations. Special close-fitting bands that fit around a person’s trunk are available for those who wish to hide an ileostomy when not wearing a shirt.
Women with ulcerative colitis may have children, but should be managed carefully. Women with ulcerative colitis used to be advised not to have children, but now most can safely do so. If the disease is inactive, most women have no special problems during pregnancy. If the disease is active, women have higher rates of miscarriage, premature deliveries, and babies born below normal weight. But with proper medical care, these problems can usually be handled with a successful outcome.
Treatment of pregnant women with active disease should be managed carefully with the help of a gastroenterologist. X-ray studies and sigmoidoscopy should be avoided. Although the use of medications during pregnancy is always of concern, in most cases the risks from untreated, active ulcerative colitis are greater than the risks of drug treatment. Corticosteroids and sulfasalazine have been safely used in pregnancy, but immunosuppressant drugs should not be used if possible.
Ulcerative colitis is a chronic disease with periods of exacerbations and remissions throughout life. Most people with ulcerative colitis experience symptoms that periodically come and go, often without apparent cause. It rarely resolves completely, although medications can often reduce symptoms and help maintain remissions.
The severity of the disease does not correlate with what part of the digestive tract is involved—these are independent variables.
The risk of colorectal cancer depends on the extent and duration of the disease. Those with only proctitis or proctosigmoiditis show no increased risk of colon cancer. If inflammation extends up through the descending colon, risk of cancer is almost three times that of the general population. Patients with pancolitis are 15 times likelier to develop cancer than others.
How long the disease has been present is also important: If pancolitis started in childhood, the risk of cancer is 162 times higher than normal. Cancer risk is not dependent on how active the disease has been over the years, underscoring the need for periodic colonoscopy even if the disease appears to have improved.
Patients need to keep in close contact with their gastroenterologist. Patients with ulcerative colitis should see their gastroenterologist annually, even if they are well. Any change in symptoms or alterations in medications should at least be reported with a phone call.
Periodic colonoscopy to search for cancer is recommended on a schedule depending on the extent and duration of the disease. Colonoscopy with biopsies of suspicious lesions can detect cancer (or precancerous changes) early enough to greatly improve the chances of cure. The colonoscopy should be done during a remission, as it is often difficult to determine if pre-cancerous changes are present when inflammation is severe.
For those with colitis only in the descending colon, experts recommend regular colonoscopies to start 15 years after the onset of disease. Those with pancolitis should start earlier, at 8 to 10 years after disease onset. Some experts urge annual exams thereafter, and others feel they can safely be done somewhat less frequently depending on individual circumstances.
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