Ulcerative Colitis

What Is Ulcerative Colitis (UC)?

Ulcerative colitis (UC) is a condition that affects the large intestine – the rectum and colon. It may affect only a part of the large intestine, or the entire colon and rectum. Rarely, it may affect the last part of the small intestine, called the ileum.

The affected part of the large intestine becomes inflamed and develops ulcers, causing symptoms that include bloody diarrhea, abdominal pain, and fever.

Inflammation is the body’s response to irritation or injury. Inflammation causes tissues of the affected part of the body to become swollen, red, warm, and painful. It is not known exactly what causes the bowel to become inflamed.

It is actually only the inner lining of the large bowel that is affected in ulcerative colitis. A similar condition, Crohn’s disease, can cause inflammation in any portion of the gastrointestinal tract and can affect the full thickness of the bowel wall. Both conditions, ulcerative colitis and Crohn’s disease, are known as inflammatory bowel disease.

In ulcerative colitis, the inflammation usually starts at the rectum and ends at some point in the colon. The affected area is “continuous,” that is, there is no area of normal tissue between the affected areas. The amount of colon involved determines the classification of the type of ulcerative colitis:

• Ulcerative proctitis – ulcerative colitis that involves only the rectum
• Proctosigmoiditis – ulcerative colitis that involves the rectum and sigmoid colon
• Left-sided colitis – ulcerative colitis that affects the entire left side of the colon: the rectum, sigmoid colon, and descending colon
• Pancolitis – ulcerative colitis that involves the entire colon

Symptoms of ulcerative colitis can be mild to severe and have no relation to how much of the colon is affected. The condition is characterized by periods of active disease, known as flare-ups, followed by periods when the disease is inactive, known as remission.

Some individuals suffer a single episode of ulcerative colitis and never experience another flare-up. Others suffer frequent flare-ups. For many people, flare-ups can be brought under control by a combination of medication and dietary changes. For some, a period of complete bowel rest and intravenous feeding is necessary.

Occasionally, removal of the entire colon – a total colectomy – is necessary to deal with repeated, debilitating flare-ups, or rarely, if colon cancer or precancerous changes occur. Removal of the colon cures ulcerative colitis.

Each individual’s pattern of symptoms is different, and conscientious doctors treat the symptoms rather than the laboratory or radiological signs.

Diarrhea, pain, and fever – along with fatigue, chills, and possibly vomiting – come and go. Flare-ups can occur seemingly out of the blue, after a viral illness such as a cold, or at times of extreme personal, business, or social stress.

What Causes Ulcerative Colitis?

To date, there is no known cause for ulcerative colitis. Therefore, ulcerative colitis is said to be an idiopathic disease, meaning that it develops without an apparent or known cause.

Ulcerative colitis appears to be a disease primarily of those living in Western, industrialized societies. Whether this is because of some kind of condition of the environment in which people live, or their diet, is not known.

Two factors seem to play a role, however:

• Weakened immune response
• Heredity

Weakened Immune Response

Between one billion and one trillion normal intestinal bacteria (enteric microflora) exist in every gram of intestinal content.

• In the healthy intestine, invading bacteria are recognized as foreign (called antigens) and are attacked by the immune system.
• But those bacteria that normally live there are left alone; the intestine is “tolerant” of such bacteria.

Immunologic evidence suggests that in the intestines of those with ulcerative colitis, some of this tolerance is lost. The TH1 cells, responsible for turning on the immunologic reaction against invading organisms, do their job; but the TH2 cells, responsible for turning the immunologic response off, fail to do their job. This causes an inappropriate inflammatory response.

Some evidence also points to flare-ups of ulcerative colitis or Crohn’s disease as being an exaggerated response to seasonal allergies, upper-respiratory infections, or other transient illnesses.

Is Ulcerative Colitis Inherited?

There is some evidence that ulcerative colitis has a genetic component.

Between 85 percent and 90 percent of people with ulcerative colitis have no relative with either ulcerative colitis or Crohn’s disease. But the 10 percent to 15 percent of people who have relatives with ulcerative colitis or Crohn’s means that the risk is statistically higher in individuals who have a family member with inflammatory bowel disease.

Other evidence points to a genetic basis: Populations that bred closely within their communities for many generations, such as Eastern European Jews, have a higher incidence of inflammatory bowel disease than other groups.

What Are The Symptoms Of Ulcerative Colitis?

The immediate symptoms of ulcerative colitis may be the same as those found in a number of other conditions that affect the bowel, such as viral, bacterial, or parasitic infection. A complete medical history and a thorough physical examination, along with laboratory and diagnostic tests, are necessary to diagnose ulcerative colitis.

Symptoms vary. They may be mild or very severe. They may come on suddenly or develop gradually. In some people the severity of the symptoms may vary with the season–worse in winter and less in summer.

Three classic symptoms indicate the possibility of inflammatory bowel disease. These symptoms only occur during flare-ups, when the disease is active. However, radiological and laboratory tests continue to show signs of the disease even during times of clinical remission.

The three classic symptoms of ulcerative colitis are:

• Persistent or recurrent diarrhea (in ulcerative colitis this diarrhea is often bloody or full of mucus)
• Abdominal pain (which in ulcerative colitis is often crampy in nature and most intense immediately before a bowel movement)
• Fever

Other symptoms may include fatigue, weight loss and loss of appetite.

In addition, there may be other signs and symptoms not related to the colon that could indicate ulcerative colitis.

Diarrhea

Three or more watery stools per day is considered diarrhea.

In cases of ulcerative colitis, frequent watery stools are the norm. Many times, these stools are accompanied by thick blood (not bright red smears of blood, which usually occur from a bleeding hemorrhoid). Mucus or pus also often passes with the stool. Occasionally, an individual with ulcerative colitis will have stool of more normal consistency that contains pus or mucus.

Abdominal Pain

Pain from ulcerative colitis is often crampy in nature and felt on the left side of the abdomen. This is logical, since the rectum above the anus moves to the left side, where it connects to the rest of the colon. Often in ulcerative colitis, the pain and cramps subside immediately after a bowel movement.

Fever

Ulcerative colitis is an inflammatory disease, and one of the key characteristics of the inflammatory process is fever (the others being pain, heat, and redness). Some individuals with ulcerative colitis suffer a high fever, especially during the acute phase of a flare-up. Others run a persistent, low-grade fever.

This fever may be accompanied by irritability and fatigue. Sometimes, the fever comes back each day, especially later in the day, then repeatedly breaks during sleep, causing night sweats.

Signs And Symptoms Not Related To The Colon

There are a number of possible signs and symptoms of ulcerative colitis that can occur outside the colon. Sometimes these occur at the same time as the intestinal symptoms, but other times they occur weeks or even months before any intestinal symptoms occur. If a doctor suspects inflammatory bowel disease, he or she will ask detailed questions about whether certain symptoms have appeared.

It is not known why symptoms occur outside the colon, but it is likely due to the immune system causing inflammation in other parts of the body.

Among these are:

• Reddening and inflammation of the eye (iritis)
• Joint pains, usually in the large joints of the knees, ankles, elbows, wrists, and shoulders, which sometimes migrate from one joint to another (migrating arthralgia)
• Skin lesions including tender red nodules on the shins or calves (erythma nodosum)
• Sores inside the mouth (aphthous ulcers)

What Tests And Procedures Are Used To Diagnose Ulcerative Colitis?

Diagnosing ulcerative colitis may involve laboratory tests and one or more procedures that allow the doctor to visualize the intestine.

It is important that if inflammatory bowel disease is suspected, a correct diagnosis of either ulcerative colitis or Crohn’s disease be made. While the two diseases have many similarities, they are distinct, and many of the newer drug treatments work better for one disease than the other.

The three diagnostic tests most frequently used are:

• Sigmoidoscopy
• Colonoscopy
• Barium enema

Certain laboratory tests also can be used to confirm a diagnosis of ulcerative colitis.

Sigmoidoscopy

Sigmoidoscopy is a procedure that allows direct visualization of the lower gastrointestinal tract; that is, the rectum and the sigmoid colon. It is most often performed with a flexible fiber-optic scope that contains a light source and a camera lens. A short, rigid scope also may be used. The camera records images that are displayed on a monitor.

The sigmoidoscope is gently inserted into the anus, then moved up through the rectum into the colon. Sigmoidoscopy can be performed in a doctor’s office or health clinic. The procedure takes five to 20 minutes, and no sedation is needed.

The doctor looks for irregularities in the mucosal lining (that is, the inner lining) of the colon. Changes to the bowel lining are continuous in ulcerative colitis, with no area of normal tissue between areas of diseased tissue.

For most people, sigmoidoscopy is mildly uncomfortable. However, for individuals who are in the midst of a flare-up of inflammatory bowel disease, the procedure can be painful.

Bowel preparation includes using one or two pre-mixed enemas about two hours prior to the procedure in order to cleanse the rectum and sigmoid colon of stool.

Colonoscopy

Colonoscopy is a more thorough examination of the entire colon, right up to the end of the small intestine (the terminal ileum). Modern colonoscopes, using microchip-driven electronic imaging and screen projection, have replaced older fiber-optic scopes. As with the sigmoidoscope, the colonoscope is inserted gently into the anus, and moved up through the colon.

There is also a small set of forceps inside the colonoscope that the doctor can control in order to remove polyps or small tissue samples for biopsy to check for cellular changes that may indicate cancer or precancerous conditions.

Colonoscopy takes about 30 minutes. It is done under what is known as “conscious anesthesia,” a combination of a sedative and pain medication that puts the individual into a semi-conscious state.

• Because of the use of this sedation, the procedure must be done in a hospital or in an endoscopy suite that has been approved and licensed by the state and provides the required emergency care for anesthesia-related complications.
• Because most people remain drowsy for some hours after the procedure, it is usually necessary to take the day off from work to undergo a colonoscopy.

The bowel preparation for a colonoscopy must be more thorough than for a sigmoidoscopy. It usually begins the afternoon prior to the exam and includes one or two laxative treatments and only drinking clear liquids for 12 to 18 hours before the exam, in order to completely purge the colon.

Barium Enema

In this procedure, a special dye called barium is inserted into the colon through a tube inserted into the rectum, and a series of X-rays is taken. Often, air is also inserted to help fill out the colon to make it easier for the X-rays to pick out abnormalities.

Plain-film X-rays without barium do not distinguish soft tissues well, especially the lining of the bowel, which must be seen clearly if the proper diagnosis is to be made.

The barium enema is considered the “gold standard” in distinguishing between ulcerative colitis and Crohn’s disease because:

• Enough barium usually goes beyond the colon into the terminal ileum to see if that area is diseased
• The barium allows the radiologist and the gastroenterologist to see if the disease is continuous or if it skips from patches of diseased tissue to healthy tissue and back again

As in colonoscopy, the bowel preparation for a barium enema must be thorough. It usually begins the afternoon prior to the exam and includes one or two laxative treatments and only drinking clear liquids for 12 to 18 hours before the exam, in order to completely purge the colon.

Laboratory Tests

A number of laboratory tests can help confirm a diagnosis of ulcerative colitis.

As part of a rectal exam, a doctor tests to see if there is any blood in the stool (called occult blood). Occult blood signals bleeding in the intestinal tract.

Blood drawn from a vein in the arm may be tested as well. The white blood cell count may be elevated, as might the red blood cell sedimentation rate (ESR). The ESR is the rate at which blood separates into its component parts of red blood cells at the bottom and plasma at the top, with other components in the middle.

A higher-than-normal sedimentation time (elevated ESR), combined with an elevated white cell count, suggests an inflammatory process, but is not specific at all. The blood count may be low, suggesting anemia (which can be due to the malabsorption of iron), excessive internal bleeding, or chronic illness, all of which occur with ulcerative colitis or Crohn’s disease.

Classifying Ulcerative Colitis

In individuals with ulcerative colitis, a distinct portion of the colon is diseased. Disease starts at the rectum and moves “up” the colon to involve more of the organ. Doctors categorize ulcerative colitis by the amount of colon involved. Regardless of how little or how much of the colon is involved, symptoms can vary from mild to severe in any individual.

Types of ulcerative colitis are:

• Ulcerative proctitis: If ulcerative colitis is limited to the rectum, it is known as ulcerative proctitis. Symptoms are diarrhea, bloody stool, pain in the rectal area, and a sense of urgency to empty the bowel.
• Proctosigmoiditis: If ulcerative colitis affects the rectum and the sigmoid colon, it is known as proctosigmoiditis. Symptoms are diarrhea, bloody stool, cramps and pain in the rectal area, and moderate pain on the left side of the abdomen.
• Left-sided colitis: Left-sided colitis affects the entire left side of the colon, from the rectum to the place where the colon bends near the spleen and begins to run across the upper abdomen (the splenic flexure). Symptoms include diarrhea, bleeding, weight loss and loss of appetite, and sometimes severe pain on the left side of the abdomen.
• Pancolitis: If the entire colon is affected, the term pancolitis is used (“pan” meaning total). The classification is most important in planning treatment. While ulcerative proctitis, proctosigmoiditis, and even left-sided colitis can be treated with local agents introduced through the anus, including steroid-based or other enemas and foams, pancolitis must be treated with oral medication so that active ingredients can reach all of the affected portions of the colon.

How Serious Is Ulcerative Colitis

People who live with ulcerative colitis are burdened by many questions, especially when they are having their first crisis and being diagnosed. These questions focus on issues of pain, symptoms, possible complications and disability

The answers to many questions are not apparent and often take a long time to determine. But most people who live with ulcerative colitis have increasingly longer periods when they feel well than they do when they are acutely ill. And this has never been more true than today, when doctors have an increasingly large arsenal of treatment options.

Moreover, the severity of the illness varies greatly for different people. One long-term study suggests that after the first attack, less than 10 percent develop chronic, longstanding, persistent symptoms, while the rest go into complete remission, and remain symptom free.

The most common concerns of people diagnosed with ulcerative colitis deal with the issues of:

• Determining the severity of the disease
• Can ulcerative colitis cause serious complications
• Possible increased risk of colon cancer

Determining The Severity Of The Disease

The severity of the disease can be measured objectively by determining symptoms such as:

• The number of stools in a day
• Appetite
• Fever
• The number of days in a month when an individual must modify his or her work, home, or social schedule because of diarrhea, fatigue, fever, and other symptoms

It can also be measured subjectively, through questioning by a doctor of an individual’s general state of being, such as whether that person is angry, depressed, in pain, embarrassed by needing to use the toilet frequently in social or business situations.

The severity of the objective signs seen on x-rays does not necessarily correspond to how severe the subjective symptoms are. One individual with disease that looks severe on radiological exam might have the ability to lead a relatively normal life, while another person with few objective signs of disease may find the conditions totally debilitating, both physically and mentally.

Can Ulcerative Colitis Cause Serious Complications?

In some people, ulcerative colitis can cause serious complications that include:

• Severe bleeding that may require blood transfusions
• Toxic megacolon, a dangerous condition where the colon becomes extremely distended (swollen), causing a person to become severely ill, with a distended belly and a high fever. The colon expands and becomes paralyzed. Occasionally, it may rupture. If this occurs, up to 30 percent may not survive it. The diagnosis is confirmed by simple x-ray of the abdomen.
• Perforation (a hole in the colon), which can cause widespread infection and can be life threatening

Not everyone who has ulcerative colitis will experience complications from the illness, however. In cases where a first attack comes on very suddenly, complications will occur in about 10 percent of individuals. Effective treatments are available for these complications.

Possible Increased Risk Of Colon Cancer

Individuals with ulcerative colitis have a slightly increased risk of developing colorectal cancer. The increase in risk is dependent on the amount of colon involved. The incidence is greatest for those with pancolitis. However, the severity of the colitis symptoms has no bearing on any increased risk.

The risk of colon cancer developing, according to various studies, is estimated at 5 percent to 10 percent after 10 years, rising to 15 percent to 40 percent after 30 years

Thus, for individuals with ulcerative colitis, the risk of developing colorectal cancer increases over time, as is true for the general population. Therefore, regular screenings–either a colonoscopy with biopsy, or a barium enema — should begin eight years after the diagnosis.

Treatment Of Ulcerative Colitis

Medical management of ulcerative colitis begins with an attempt to reduce the symptoms and bring on a remission. After this is accomplished, the goal is to maintain remission for as long as possible.

Treatment options include:

• Medication
• Surgery
• Alternative treatments

Medications

Most of the medications used to treat ulcerative colitis are generally safe for long-term use, and many individuals stay on maintenance doses of medications indefinitely. Medications include:

• 5-ASA compounds
• Steroids
• Medications to suppress the immune system
• Experimental treatments

• 5-ASA Compounds – A number of medications used to treat ulcerative colitis all have as their active ingredient 5-aminosalicylic acid (5-ASA). These include sulfasalazine (trade nameAzulfadine), a compound that has been used for more than half a century. The sulfapyradine in sulfasalazine causes a number of side effects, which include mild to severe headaches, nausea, and vomiting. These are usually dose-related, although some people cannot tolerate the medication at all. Azulfadine can be purchased in an enteric-coated tablet, which helps many people reduce the nausea caused by uncoated tablets.

  For years, scientists sought ways to deliver 5-ASA without the sulfa-drug side effects. During the 1990s, a number of new 5-ASA medications were approved. None are yet available as generics. They can be found under the following trade names and in the following formulations:

  • Asacol (mesalamine), available as a 400-milligram coated caplet
  • Pentasa (mesalamine), available as a 250-milligram capsule
  • Rowasa (mesalamine), available as a 500-milligram rectal suppository or a 4,000-milligram enema, and which has been shown to be especially effective in proctitis, proctosigmoiditis, and left-sided colitis
  • Dipentum (osalazine), available as a 250-milligram capsule

  Evidence shows that all the new 5-ASA compounds are effective in large doses for treatment of flare-ups, and in lower doses for maintenance therapy. In general, the particular compound and method of administration (oral or rectal) used to bring about remission of a flare-up is the same compound and method that should be used for maintenance.

  Because these medications are all expensive, many doctors continue to use sulfasalazine as the first medical treatment.

• Steroids – Steroids are powerful drugs that reduce inflammation and suppress the body’s immune system. Steroids can be applied topically by enema (easily placed directly into the rectum) for treatment of proctitis, proctosigmoiditis, and left-sided colitis, or taken by mouth for pancolitis or for any disease that does not respond to topical steroids.

  Steroids are used to treat moderate-to-severe symptoms during a flare-up. Steroids have not been shown to be beneficial as a maintenance therapy, and individuals should be weaned off steroids as quickly as possible.

  Prednisone and prednisolone are the most commonly used steroids for ulcerative colitis treatment. While they are very useful, they also can produce a number of side effects, which range from annoying to dangerous. Some side effects are more often seen with long-term use, while others can appear from even short-term use.

  • Long-term side effects include “mooning” of the face, acne, insomnia, tremors, night sweats, and significant weight gain. Mood disturbances and some sleep disturbances can occur with even short-term use.
  • Dangerous side effects include increased blood pressure, osteoporosis, severe depression, and occasionally even psychosis (a confused state of not knowing what is real and what is not). Long-term steroid use can also cause cataracts and glaucoma.

  Nice To Know: Q. Should I be worried about steroid treatment? A. Steroids have proved to be powerfully effective medications for literally thousands of people who live with ulcerative colitis. However, steroids are also toxic. Doctors today know that steroids are useful in bringing about remission, but not in maintaining remission. This knowledge, and better understanding of the drugs such as 6-MP that regulate the body’s immune response, allow doctors to get people off steroids much more quickly than in the past. Today, far fewer people are steroid dependant than years ago.

• Medications to Suppress the Immune System – These medications are known as immunosuppressive drugs. They are powerful compounds that override the body’s natural immune defenses. They are widely known for their use with organ transplants to reduce the possibility of rejection. In the 1960s, physicians began experimenting with immunosuppressives for treatment of both Crohn’s disease and ulcerative colitis.

  Today, doctors continue to refine the dosages used in treating inflammatory bowel disease, and in these doses the drugs are considered “immunoregulators” rather than immunosuppressives. Generally, they are used more often in Crohn’s disease than ulcerative colitis.

  However, one drug, the antimetabolite 6-mercaptopurine (6-MP, sold under the trade name Purinethol), has proved very effective in helping individuals get off steroids without inducing another flare-up, and thus has reduced the number of people who are steroid-dependent in the long term.

• Experimental Treatments – Certain nontraditional treatments also may be helpful. They include the following:
  • A compound found in fish oil, called omega-3 fatty acids, may reduce the level of a substance called leukotrienes, which play a role in inflammation. Small studies show some improvement in people with active ulcerative colitis, although not in maintaining remission.
  • Short-chain fatty acids, such as butyrate, exist in the lining of the colon. These nutrients are produced during digestion of complex carbohydrates. The intestinal lining of individuals with ulcerative colitis may not produce these nutrients. In several small trials, 35 of 41 people with ulcerative colitis benefited from SCFA enemas.
  • Rapidly metabolized steroids such as budesonide are being looked at as a way of maintaining steroid therapy for those who are steroid-dependent and who don’t respond to 6-MP or cannot tolerate it, as well as for reducing the side effects of more traditional steroid treatment.
  • Nicotine gum and patches are also being studied. A significant proportion of newly diagnosed patients are former smokers who have quit within the previous four years. Nicotine has been shown to provide some protection against ulcerative colitis, and nicotine gum and patches have been shown to assist in bringing on remission after a flare-up, although not in maintaining remission.

Surgery

There is only one surgical treatment for ulcerative colitis. That is total colectomy, which is removal of the colon. This surgical procedure cures the disease, since the diseased organ is removed. But this surgery is life altering, since other methods must be used after the surgery for eliminating waste from the body.

• Most surgery for ulcerative colitis is performed on individuals who have had the disease for many years and have suffered constant flare-ups, in whom quality of life has become severely impaired.
• Another reason for surgery is the presence of precancerous lesions in the colon.
• Surgery is necessary in an emergency such as perforation (a hole in the colon), severe bleeding, or toxic megacolon, a dangerous condition where the colon becomes extremely distended, causing a person to become severely ill with a high fever.
• Surgery is also often undertaken in an urgent situation known as fulminant colitis, which involves severe diarrhea and bleeding, accompanied by high fever, that persists for many hours. In this case, doctors try to stabilize the individual with high doses of intravenous steroids before undertaking surgery.

Surgery for ulcerative colitis involves removal of the entire colon, regardless of whether all or only a portion of the colon is diseased. Because the colon is being removed, eliminating solid food waste will change. The colon acts as a storage area for waste to be held while water is reabsorbed into the body. Without the colon, stool is eliminated as a more liquid product. Depending on the type of reconstruction done after the surgery, stool is either eliminated through the anus or through an opening in the side of the abdomen called an ostomy.

There are three options for elimination of waste after a total colectomy:

1. The first, considered the gold standard, is a standard ileostomy, in which the end of the small intestine (the terminal ileum) is brought to the abdominal wall and an opening is created in the side of the abdomen below the last rib. Intestinal contents drain continuously into a bag that lies flat against the abdomen, which is emptied when it becomes full.
2. A continent ostomy is formed when an internal pouch is created under the abdominal wall to collect waste, and a valve is created at the ostomy site. The internal pouch is drained a number of times each day by means of a rigid tube placed through the valve. In this case, no external apparatus needs to be worn.
3. The third option is the ileo-anal pull-through. This allows elimination through the anus. In this case, the surgeon leaves the muscular sleeve of the rectum intact and attaches the ileum to this sleeve. A small J-pouch is created to hold some intestinal content.

   When this surgery works, an individual has about six to eight soft stools throughout the day. If the anal sphincter does not prove to be functional over time and bowel incontinence develops, an ostomy can be created at a later time. Ileo-anal pull-through surgery is not always successful and sometimes must be converted to an ostomy.

Alternative Treatments

Mind-body treatments can help individuals with ulcerative colitis manage pain, can contribute to a sense of well-being, and can give individuals a sense of control over a situation where, in medical terms, they have little or no control. There is, however, no proof that these therapies can undo the cellular changes done by ulcerative colitis.

Mind-body treatments include:

• Biofeedback
• Guided imagery
• Hypnotherapy
• Sound/music therapy
• Relaxation techniques
• Prayer and meditation

Postural therapies and exercises such as the Alexander technique, the Feldenkrais method, and the Trager method, as well as Tai Chi, can help an individual concentrate on choreographed body movements, prove relaxing, and provide a low-intensity physical workout when more active exercise is not possible.

Eastern treatments such as acupuncture and acupressure can also be used. But Chinese herbal treatments, and naturopathic or homeopathic treatments, are not recommended by medical doctors.

Living With Ulcerative Colitis

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.

These include:

• 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.

Below we consider:

Nutritional issues and proper diet

Dealing with a flare-up

Fertility and child-bearing

Ulcerative Colitis in the elderly

Nutritional Issues And Proper Diet

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.

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.

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.

For further information about diverticular disease, go to Diverticular Disease.

For further information about colorectal cancer, go to Colorectal Cancer.

What Is The Outlook For People With Ulcerative Colitis?

On a daily basis, scientists are gaining a better understanding the genetic aspects of ulcerative colitis, as well how the immune system malfunctions and the relationships between infections and long-term inflammatory diseases such as ulcerative colitis.

New medications are in human trials and promise to provide greater relief with fewer side effects. And surgical techniques continue to be refined, allowing for more individuals to have improved options for elimination of food waste after a colectomy.

Ulcerative Colitis: Frequently Asked Questions

Here are some frequently asked questions related to ulcerative colitis.

Q: Is ulcerative colitis an autoimmune disease?

A: There is certainly a malfunction in the immune system that takes place in ulcerative colitis. However, immunosuppressive medications used to keep individuals from rejecting transplanted organs have shown less effectiveness in treating ulcerative colitis than in treating Crohn’s disease.

Q: Is ulcerative colitis life threatening?

A: Ulcerative colitis is very rarely life threatening. Cases of toxic megacolon or excessive bleeding due a very severe flare-up where the colon swells up massively can be life threatening, which is why surgery is undertaken quickly if these conditions develop. Normally, ulcerative colitis is a chronic, life-long illness, characterized by periods of few symptoms, known as remission, and periods of very active disease, known as flare-ups.

Q: If both parents have ulcerative colitis, what are the chances that their children will have ulcerative colitis?

A: Ulcerative colitis is not a strictly genetic disease. To date, scientists have found no specific gene that miscodes and causes ulcerative colitis. The chances of a child having ulcerative colitis if his or her parents do is only slightly greater than the chances of any child having ulcerative colitis.

Q: If I need surgery, will I have to wear an ostomy bag?

A: Not necessarily. There are three options for eliminating bowel waste after removal of the colon. One is the standard ostomy, and use of ostomy appliances. Another is a so-called continent ostomy, which is emptied through a rigid tube you insert through the valve-like ostomy opening. The third is the ileo-anal pull-through, where the ileum is attached to the rectal wall, and you eliminate through the anus.

Q: Should I be worried about steroid treatment?

A: Steroids have proved to be powerfully effective medications for literally thousands of people who live with ulcerative colitis. However, steroids are also toxic. Doctors today know that steroids are useful in bringing about remission, but not in maintaining remission. This knowledge, and better understanding of the drugs such as 6-MP that regulate the body’s immune response, allow doctors to get people off steroids much more quickly than in the past. Today, far fewer people are steroid dependant than years ago.

Q: Are diagnostic tests to find out if I have ulcerative colitis painful?

A: A sigmoidoscopy entails some discomfort, but little pain for most people. If you have active disease, however, this test can be very uncomfortable. Colonoscopy is a more painful procedure, and because of that, doctors use a combination of a sedative and a painkiller, known as “conscious anesthesia,” when performing a colonoscopy. Abarium enema also is uncomfortable, but not usually painful, except when it is performed on a person with active disease.

Q: Should I be worried about colon cancer if I have ulcerative colitis?

A: Statistical evidence does show that people with ulcerative colitis do have a slightly higher incidence of colon cancer than the general population. For this reason, doctors begin regularly screening those with colitis eight years after diagnosis. Those with pancolitis (ulcerative colitis affecting the entire colon) have the highest incidence of colon cancer.

Q: My 11-year-old was just diagnosed with ulcerative colitis. I thought only adults could get the disease. Does my child face any special obstacles in having the disease treated?

A: In the last quarter century, it has become clear that ulcerative colitis affects large numbers of children and young teens. Nutritional deficiency is a major issue in treatment of children with ulcerative colitis. Children are growing machines, and although inflammatory bowel disease may not cause great weight loss for youngsters, a failure to grow and a backsliding on height and weight charts should be a sign that something is wrong and worth investigating. Children facing ulcerative colitis also have significant self-image issues to deal with.

Ulcerative Colitis: Putting It All Together

Here is a summary of the important facts and information related to ulcerative colitis.

• Ulcerative colitis is a chronic inflammatory condition that affects part or all of the large intestine (colon). Ulcerative colitis is characterized by periods of active inflammation, called flare-ups, and periods of reduced or no symptoms, called remission.
• Ulcerative colitis has a genetic component, with a higher probability of incidence in families in which another member has ulcerative colitis, or Crohn’s disease, an inflammatory condition that can appear anywhere in the digestive tract.
• Together, ulcerative colitis and Crohn’s disease are known as inflammatory bowel disease.
• For individuals with refractory disease (disease that is not responsive to medical treatment or management) removal of the entire colon (total colectomy) will cure the condition.
• Ulcerative colitis has been shown to correlate with a higher incidence of colon cancer. The amount of colon involved in the colitis is not related to the increased incidence of cancer; the length of time since colitis was diagnosed does relate.

Ulcerative Colitis: Glossary

Here are definitions of medical terms related to ulcerative colitis.

Barium enema: A procedure in which the special dye called barium is inserted into the colon through a tube inserted into the rectum, and a series of X-rays is taken.

Colectomy: Colectomy is the removal of the colon.

Colonoscopy: Colonoscopy is an examination of the entire colon, using an electronic imaging scope inserted gently into the anus and moved up through the colon, with the image projected on a screen.

Enema: A procedure in which a solution is introduced into the rectum for cleansing or therapeutic purposes.

Flare-up: A flare-up is an increase in clinical disease symptoms.

Ileo-anal pull through: A technique used during colectomy surgery to allow the patient to continue eliminating solid waste through the anus. The terminal ileum (end of the small intestine) is pulled down and attached to the inner lining of the rectum, which has been left intact after removal of the rest of the colon.

Immunoregulators: A class of drugs that reduces the body’s natural immune system response. Also called immunosuppressives.

Inflammation: An immune system reaction to what is perceived as a foreign organism attacking the body; this reaction causes tissue to become swollen, red, hot, and painful.

Inflammatory bowel disease: The classification of disease that includes ulcerative colitis and Crohn’s disease.

Left-sided colitis: Colitis that affects the entire left side of the colon: the rectum, sigmoid colon, and descending colon.

Mortality rate: Death rate

Osteoporosis: A loss of bone density. It may result from long-term use of steroid drugs and even after short-term steroid use.

Ostomy: A surgically constructed opening from the terminal ileum to the outside of the abdominal wall that allows an individual to eliminate solid waste after a colectomy. A standard ostomy involves collection of waste in an external bag. A continent ostomy involves a pouch surgically constructed below the skin in which waste collects, then is emptied through a valve.

Pancolitis: Ulcerative colitis that involves the entire colon.

Polyps: Small growths that protrude from the surface of a mucosal membrane.

Proctosigmoiditis: Ulcerative colitis that involves the rectum and sigmoid colon.

Remission: The period of time when disease symptoms are absent.

Sigmoidoscopy: Sigmoidoscopy is the insertion of fiber-optic scope gently into the anus for the visualization of the rectum and sigmoid colon.

Steroids: A classification of drugs used in treating ulcerative colitis and other chronic inflammatory conditions such as Crohn’s disease, rheumatoid arthritis, and lupus.

Total parenteral nutrition (TPN): Intravenous feeding involving nutritionally balanced solutions that include proteins, fats, and carbohydrates, delivered into a major vein–usually under the collarbone. TPN can be administered in a hospital setting or through home infusion.

Ulcerative proctitis: Ulcerative colitis that involves only the rectum.

Ulcerative Colitis Additional Sources Of Information

Here are some reliable sources that can provide more information on ulcerative colitis.

Crohn’s and Colitis Foundation of America 
Phone: (212) 685-3440 or 
Phone: (800) 932-2423
http://www.ccfa.org

The Crohn’s and Colitis Foundation of America is the preeminent organization involved in patient education, advocacy, and research intoinflammatory bowel disease. CCFA has chapters in most states, and more than one chapter in many states. The national headquarters can provide contact names and phone numbers for local chapters. Chapters hold information and education meetings, and facilitate support groups for people who live with inflammatory bowel disease, as well as their spouses, parents of children, and other caregivers.

CCFA’s Web page is perhaps the best reference for information about inflammatory bowel disease. It has won design awards since 1997, and is easy to navigate. Membership registration is available via the Web. There is general educational material for patients and caregivers, as well as highly technical information for health-care providers and readers looking for more depth in their research. The organization’s Web-linked e-mail system allows individuals to query noted experts in the field who are affiliated with CCFA.

United Ostomy Association 
Phone: 1-800-826-0826
http://www.uoa.org

For those who have had surgery that included an ostomy.

Books

Inflammatory Bowel Disease: A Guide for Patients and Their Families, edited by Stanley H. Stein, M.D. and Richard P. Rood, M.D., Lippincott-Raven, 1999. A comprehensive guide to the issues of inflammatory bowel disease, with chapters written by experts in their fields.

Understanding Crohn Disease and Ulcerative Colitis, by Jon Zonderman and Ronald Vender, M.D., University Press of Mississippi, 2000. Written by an individual who lives with Crohn’s disease and the gastroenterologist who has been treating him for 12 years.