Living with a chronic disease has often been called the equivalent of having another full-time job. For some, it may be a constant struggle of management: managing medication, appointments with health-care providers, and one's own physical and mental energy.
People with ulcerative colitis must carry out their daily lives in ways that help to maintain maximum health.
Sticking to a diet that works
Getting enough sleep, even if that means saying no to work, community, social, or even family events that require late nights
Taking prescribed medication, even when feeling well
Keeping appointments with health-care providers
Having a chronically ill family member is stressful for every person in the household. At the same time, the family is the central unit in the support system for any person who suffers from ulcerative colitis.
If the ill individual is a child, the adults' lives are turned upside down, and brothers and sisters often feel a lack of attention as their parents' efforts are largely directed toward the ill child. If the individual is a parent, a disproportionate burden of family life can fall on the healthy partner, turning that person into a de facto single parent.
Children can feel uneasy about having a parent who is unable to participate in their lives, who is frequently in the hospital or at home in bed and thus cannot attend school, music, athletic, or other events.
In addition, hospitals are stressful places. A majority of people with ulcerative colitis will have at least one hospital admission due to the disease over their lifetime, either to treat a flare-up that is not responding or to have surgery. A hospitalization should not be seen as the disease having "won" but rather as a time to regroup and regain strength, to cope with the disease and get back to really living again.
Poor nutrition, and even malnutrition, are a constant threat to individuals with ulcerative colitis. The disease creates a vicious cycle:
Fever and diarrhea cause a loss of appetite.
Yet fever itself, by raising the metabolic rate, adds to the need for caloric energy.
Diarrhea can lead to dehydration, and to temporary lactose intolerance (the inability to digest milk sugars).
Lactose intolerance causes lactose to ferment in the colon, leading to cramps and more diarrhea.
Lactose intolerance can also indirectly lead to calcium deficiency, which can lead to loss of bone density, a condition called osteoporosis. This can be especially true for individual being treated with corticosteroid medications, such as prednisone.
For further information about osteoporosis, go to Osteoporosis.
Individuals with ulcerative colitis have fewer problems with nutrient absorption than those with Crohn's disease, since colitis does not affect the small intestine, where absorption occurs.
Nutritional treatment for ulcerative colitis has two main goals:
The first is to increase the intake of calories, especially in the form of proteins, as well as vitamins, minerals, and trace elements, to prevent nutritional deficiency.
The second is to create an eating pattern that minimizes stress on the diseased colon. This often means smaller, more frequent meals. Many nutritional counselors suggest six half-sized meals each day, equally spaced, with the last at least three hours before bedtime.
Need To Know:
Most doctors tell people with ulcerative colitis that their diet should be "normal, as tolerated." There is no conclusive evidence that particular food has any influence on the occurrence of flare-up. However, during a flare-up, doctors often suggest that individuals reduce their dietary fiber, such as whole grains and raw fruits and vegetables.
Dealing With A Flare-Up
Some people who feel a flare-up coming on seek medical attention immediately, while others choose to "lay low" for a few days and try to "ride it out," only speaking to the doctor if they can't shake the symptoms after a couple of weeks. Flare-ups caught early can often be treated more easily than those that go for a longer time before a doctor's intervention, although this is not always the case.
Flare-ups are distressing. They change all of the normal rhythms of life and often necessitate days off from work or school, and changes in social or family plans. Severe flare-ups can cause nutritional deficiency or dehydration from diarrhea, and can lead to hospitalization so that the condition can be controlled.
An individual with ulcerative colitis should not allow dramatic changes in bowel habits (increase in frequency or watery/bloody stools), fever, increase in pain, or nausea with or without vomiting, to go on more than a day or so before contacting the doctor.
Dealing with a flare up usually involves first increasing the dosage of any medications the individual is currently taking. The doctor may want to see the individual in the office, in order to check weight, take blood, and actually look at the individual--some of the assessment tools used in judging active disease.
A flare-up that does not respond to increased dosage of current medication, rest, and extra fluids may require use of different medications. A period of complete bowel rest, with intravenous fluids or even TPN (intravenous feeding), may be required during severe flare-ups.
Hospitalization is by far the most expensive treatment for flare-ups and the last resort. While administration of medication and nutritional supplements can be better managed in the hospital than on an outpatient basis, hospitalization puts an individual at risk of contracting a hospital-based illness such as a staph infection. This is especially true if a person is taking medications that suppress the immune system, as many medications used to treat ulcerative colitis do. Whenever possible, doctors prefer to treat flare-ups on an outpatient and at-home basis.
Fertility And Childbearing
There is no evidence to suggest that inactive ulcerative colitis has any effect on either female or male fertility, or on a woman's ability to carry a pregnancy to term or have a vaginal delivery.
None of the medications used to treat inflammatory bowel disease have been shown to cause birth defects when used by men. However, some of these medications have been shown to decrease sperm count and reduce sperm motility. For this reason, if a couple is trying to conceive and the man has ulcerative colitis, it is suggested that he go off medication and resume its use as soon as a pregnancy has been confirmed.
However, active disease can affect fertility in women. This is due mainly to the fever, anemia, and possible infection. Both obstetricians and gastroenterologists suggest that if a woman experiences a flare-up while trying to conceive, she focus first on getting her colitis under control, then go back to trying to have a child.
Some of the immunoregulators used to treat ulcerative colitis have been shown to slightly increase the statistical chance of birth defects when used by pregnant women. Whenever possible, women being treated for ulcerative colitis should go off their medication during pregnancy.
Need To Know:
Women with ulcerative colitis whose disease is in remission at the time they conceive most frequently have increased symptoms during their first trimester (if they have any at all). Many women also suffer flare-ups immediately after giving birth. Doctors believe this is due to hormonal changes during pregnancy.
Ulcerative Colitis In The Elderly
While ulcerative colitis is often thought of as a disease of the young, about 20 percent of new cases are diagnosed in individuals over age 60. Diagnosis of late-onset colitis is often difficult, since the symptoms are so similar to those of a host of other diseases more commonly found in older people. These include ischemic colitis (caused by a lack of blood flow to the bowel), diverticulosis, and colon cancer.
Most older people - whether they have been recently diagnosed or have been living with the condition since they were younger - can be treated with the same medications as younger adults. However, some find that they can tolerate only lower doses.
In addition, since many older people have multiple medical problems, it is especially important for them and their caregivers to coordinate treatment by their gastroenterologist with that of other health-care providers. It is especially important to notify all treatment providers of changes in medication taken for ulcerative colitis.
Diet and nutrition can also be more complicated for the elderly than for younger adults. They may be limited in their intake of sugar or salt. Because of this, a nutritional consultation may be especially helpful.