Living with Ulcerative Colitis
~ by Jo Jordan
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Ulcerative colitis (UC) and Crohn’s disease (CD) are similar illnesses, both part of a group of disorders known as inflammatory bowel disease (IBD). Ulcerative colitis and Crohn’s disease inflame the lining of the digestive or gastrointestinal (GI) tract.
Ulcerative colitis inflammation involves the top layer of the innermost lining of the large intestine (colon) and rectum, whereas Crohn’s disease can affect any area in the GI tract. Ulcerative colitis inflammation tends to affect all of the lining in the affected segment of the intestine uniformly, whereas Crohn’s disease inflammation is concentrated in some areas more than others.
Also referred to as ulcerative proctitis, left-sided or distal colitis, pancolitis or universal colitis, and fulminant colitis, ulcerative colitis causes sores (ulcers) to form in the lining of the rectum and colon in places where inflammation has destroyed the cells that normally line the colon; these ulcers bleed and produce pus. Characterized by abdominal pain and diarrhea, ulcerative colitis is sometimes debilitating, and can result in life-threatening complications.
Other than removal of the colon and rectum, there is no cure for ulcerative colitis. Treatment, however, can substantially reduce symptoms, and sometimes even bring about long-term remission.
Types of Ulcerative Colitis and Associated Symptoms
The most common ulcerative colitis symptoms are abdominal pain and bloody diarrhea. Other symptoms include anemia, appetite loss, joint pain, loss of body fluids and nutrients, rectal bleeding, severe fatigue, skin sores, and weight loss.
Ulcerative colitis is classified by the severity of inflammation and its location. Accompanying symptoms, depending on the type of colitis, are as follows:
Ulcerative proctitis: inflammation confined to the rectum – Mild, intermittent rectal bleeding is sometimes the only sign of the disease. In other cases, there may be more severe rectal inflammation, rectal pain, and an inability to expel waste in spite of a painful urge to do so.
Left-sided or distal colitis: inflammation beginning at the rectum and extending up the left colon (sigmoid colon and descending colon) – Symptoms include left-sided abdominal cramping and pain, bloody diarrhea, and weight loss.
Pancolitis or universal colitis: inflammation affecting the entire colon (right, left, and transverse, and rectum) – Symptoms include abdominal pain and cramps, bloody diarrhea, fatigue, fever, night sweats, and weight loss. Pancolitis patients generally suffer from more severe disease than those with other ulcerative colitis forms, and are more difficult to treat.
Fulminant colitis: a rare, life-threatening form of pancolitis – Symptoms include extreme dehydration, severe abdominal pain, copious amounts of diarrhea with bleeding, and sometimes shock. At risk for developing toxic megacolon (stretching of the colon due to severe inflammation) and colon rupture (perforation), these patients must be hospitalized.
While periods of serious illness often alternate with periods of remission, >the location and extent of ulcerative colitis tends to remain the same. A small percentage of those with milder ulcerative colitis ever develop more severe symptoms.
Who Gets Ulcerative Colitis? Causes and Risk Factors
While the exact cause is unknown, scientists no longer believe stress or diet to be the primary causes. The following factors are thought to contribute to the onset of ulcerative colitis:
Heredity: Ulcerative colitis tends to run in families; those with a parent or sibling with the disease are more likely to develop it than those without.
Immune system vulnerability: A genetic susceptibility may trigger an abnormal response to the bacterium in some people, leading to ulcerative colitis onset. Viruses may also be responsible for ulcerative colitis.1
The following ulcerative colitis risk factors have been documented:
Age: Ulcerative colitis occurs in all age groups, but normally starts between fifteen and thirty.2
Ethnicity: Ulcerative colitis occurs in all groups, but whites are at the highest risk. Those of Jewish heritage are at an even higher risk.3
Gender: Ulcerative colitis affects men and women almost equally, but ulcerative colitis is slightly more common in males.
Locale: Ulcerative colitis occurs more often in people living in cities, industrial nations, and northern climates.
Isotretinoin (Accutane) use: This drug – used to treat scarring cystic acne – has been linked to the development of IBD.4
Click inflammatory bowel disease to read more on ulcerative colitis causes and risk factors.
Complications of Ulcerative Colitis
In sufferers with ulcerative colitis that is limited to the rectum (proctitis), serious complications are rare. For those with ulcerative colitis that is more extensive, blood loss from intestinal inflammation can lead to anemia, and may require iron supplementation or, in extreme instances, a blood transfusion.
The most serious ulcerative colitis complication is toxic megacolon. In rare cases, when inflammation is severe, the colon can dilate and become very large. When this happens, the colon becomes paralyzed, preventing bowel movements and/or the passing of gas.
Extreme illness with abdominal pain and swelling, dehydration, disorientation and grogginess, fever, malnutrition, and weakness can result from toxic megacolon. Removal of the colon is necessary to prevent colon rupture – and peritonitis (inflammation of the tissue layer of cells lining the inner wall of the abdomen and pelvis) – if patients don’t immediately respond to treatment.
In spite of the fact that colon cancer is a recognized ulcerative colitis complication, the majority of IBD sufferers don’t develop cancer.
If IBD has spread farther than the rectum, a colonoscopy is recommended every year or two to be on the alert for early signs of colon cancer. For those with only ulcerative proctitis, increased risk is likely not a factor.
Ten percent of ulcerative colitis patients develop arthritis5, and some sufferers experience resulting lower back pain. In rare cases, painful red skin sores develop. Eye inflammation and the risk of permanent vision loss is a risk, as are diseases of the liver and bile ducts. Other complications include osteoporosis, perforated colon, and severe dehydration.
Children with ulcerative colitis may experience delayed growth and/or stunted sexual development.
Diagnosing Ulcerative Colitis
Ulcerative colitis is sometimes difficult to diagnose because the symptoms are similar to those associated with Crohn’s disease and other intestinal disorders. Sometimes a ulcerative colitis diagnosis can only be made after ruling out other causes for symptoms, including Crohn's disease, colorectal cancer, diverticulitis, infection, irritable bowel syndrome (IBS), and ischemic colitis.
Laboratory tests
Along with a complete physical exam, a series of tests may be necessary to make an accurate ulcerative colitis diagnosis. The most commonly used diagnostic techniques for ulcerative colitis include,
A complete blood count (CBC)
…To check for anemia, sometimes a sign of intestinal bleeding or bleeding in the colon or rectum.
…To uncover a high white blood cell count, a sign of the presence inflammation.
…To uncover sedimentation rates (a measure of the separation of red blood cell matter over a given period of time). Depending on the outcome rate, infection and/or inflammation could be indicated.
Other blood tests may reveal low red blood cell counts (anemia), low blood proteins, and low body minerals, an effect of chronic diarrhea.
Anti-body tests
Various tests screen for the presence of certain antibodies. Results can assist in pinpointing IBD type.
Stool studies
Stool samples can indicate the presence of intestinal bleeding, infection, or parasites. This testing method can also reveal white blood cells, the presence of which indicates ulcerative colitis or other types of IBD.
Endoscopy
Endoscopic tests for specific sections of the GI tract are used to do a visual exam and ulcerative colitis diagnosis. All use a thin, flexible tube with a lighted camera inside the tip, which enables health care providers to examine the GI tract lining.
Sigmoidoscopy — Examines the lining of the sigmoid colon (the lower third of the large intestine). A biopsy – the taking of a tissue sample from the intestinal lining to be used for further examination – can be done during the sigmoidoscopy to determine colitis severity level. This exam may overlook inflammation and bleeding higher up in the colon and/or small intestine.
Colonoscopy — Examines the lining of the entire large intestine (colon), and can sometimes peek into the end of the small intestine. A biopsy can be performed during a colonoscopy. More accurate than barium X-rays (see below) in detecting bleeding, small ulcers, or areas of inflammation on the colon wall, a colonoscopy is also a better tool for assessing the degree of inflammation.
Radiographic Tests
Small bowel X-ray with barium – A chalky solution, barium, is drunk to coat the lining of the small intestine. Barium appears white on X-ray film, revealing inflammation and/or other intestinal abnormalities.
Barium can also be administered via the rectum. Referred to as a barium enema, this procedure is used to collect X-ray images of the rectum, colon, and a portion of the small intestine. This procedure isn’t as accurate as a colonoscopy, nor does it enable health care providers to do a biopsy.
Computerized tomography scans (CT or CAT) – A specialized X-ray technique capable of collecting more detail than a standard X-ray, CT scans examine the entire bowel as well as tissues outside the bowel that can't be viewed with other tests. Especially helpful in detecting abscesses, fistulas, and blockages, this technique is used to determine the location and severity of ulcerative colitis.
Click inflammatory bowel disease to read more on diagnosing ulcerative colitis.
Treating Ulcerative Colitis
While there is no cure for ulcerative colitis, treatment can be effective at reducing the number of flare-ups a sufferer must endure. Treatment depends on disease location and severity, complications, and the patient’s response to medication. Ulcerative colitis normally recurs at various time throughout the sufferer’s lifetime, but some individuals experience years of symptom-free remission.
Ulcerative colitis treatment goals include,
- Relieving symptoms such as abdominal pain, diarrhea, and rectal bleeding
- Controlling inflammation
- Correcting nutritional deficiencies
- Inducing and maintaining remissions
- Minimizing treatment side effects
- Optimizing quality of life
IBD treatment includes medications, dietary and lifestyle changes, and surgery.
Medications
The effect of ulcerative colitis medications varies considerably; what works for one person, may not work at all for another. It can take time to discover and put an effective treatment plan into place. Side effects are also a consideration when deciding on a comfortable, effective ulcerative colitis treatment course of action.
Medications for treating ulcerative colitis include anti-inflammatory agents such as aminosalicylates, corticosteroids, and antibiotics; immune system suppressors
such as infliximab (Remicade); immunomodulators / biologic therapies (TNF inhibitors); and other medications such as anti-diarrheal [i.e. atropine (Lomotil) or loperamide (Imodium)] and fluid replacements, fiber supplements such as psyllium powder, laxatives, and pain relievers.
Nicotine skin patches can provide short-term relief from ulcerative colitis flare-ups for some people, especially ex-smokers.6
Infliximab (Remicade) – an immune system suppressor – was approved by the U.S. Food and Drug Administration (FDA) in 1998 for maintaining clinical remission and mucosal healing in patients with moderately to severely active ulcerative colitis, who’ve not had success with conventional therapy.7 An antibody, it blocks the body’s inflammation response by neutralizing tumor necrosis factor (TNF), a protein produced in the immune system.
TPN (total peripheral nutrition) or special high-calorie liquid intravenous nutrition formulas are sometimes recommended, especially for children whose development has been delayed. To facilitate temporary additional nutrition for those whose intestines need a rest or for people who are suffering from mal-absorption, intravenous feeding may be indicated.8
Dietary and Lifestyle Changes
To help minimize symptoms and increase the time between flare-ups, diet and lifestyle changes can be effective.
An appetite decrease is common with ulcerative colitis sufferers. This – along with poor absorption – can drastically reduce their ability to receive adequate daily nutritional requirements. For this reason, it is crucial that ulcerative colitis patients take special care to ensure a nutritious diet as well as to avoid foods that seem to trigger or worsen symptoms.
Foods
Some foods aggravate ulcerative colitis symptoms.9
Avoid problem foods: gassy foods such as beans, cabbage, cauliflower, and broccoli; raw fruit juices and fruits — especially citrus fruits — spicy food, popcorn, alcohol, caffeine, and foods and drinks that contain caffeine, such as chocolate and soda. Some people find very crunchy foods such as raw apples and carrots especially problematic.
Dairy products: ulcerative colitis sufferers are sometimes lactase deficient (the enzyme that breaks down milk products) and, therefore, find low lactose diets or the use of an enzyme product, such as Lactaid, helpful. Substitute yogurt and/or low-lactose cheeses, such as Swiss and cheddar, for milk.
Experiment with fiber: fiber may make diarrhea, pain, and gas worse, especially for those with small intestinal disease. If raw fruits and vegetables are irritating, steam, bake, or stew them.
Try low-fat foods: With ulcerative colitis of the small intestine, digesting and absorbing fat is sometimes difficult, so it passes through the intestine, worsening diarrhea. Butter, margarine, peanut butter, nuts, mayonnaise, avocados, cream, ice cream, fried foods, chocolate, and red meat can be especially problematic.
Eat small meals: five or six small meals rather than two or three larger ones are preferable.
Carbonated drinks produce gas: drink plenty of non-carbonated liquids such as water.
Supplementation
Prebiotics and probiotics – as well as fish oil – are effective treatment alternatives for some ulcerative colitis sufferers.
Inflammation along the length of the small intestine impairs the absorption of all food. Because absorption problems normally go hand in hand with digestive disorders such as ulcerative colitis, a multi-vitamin supplement is strongly recommended.
Take a multi-vitamin that contains folic acid (B9) and vitamin C to combat possible deficiencies resulting from reducing fruit and vegetable consumption. Calcium and vitamin D taken together are indicated where mal-absorption is present, as well an iron supplementation (folate), and/or occasional vitamin injections.
Click to read about IBD, and the effects of mal-absorption.
Stress
Some people with ulcerative colitis report flare-ups when they find themselves in a range of stressful situations from minor, everyday problems through to the death of a loved one; others report an overall increase in stress levels from constantly coping with illness.
If a connection between stress levels and the worsening of symptoms is apparent, learning to manage stress is vital. Basic things – such as eating properly and getting sufficient rest – help to ease stress.
Some people also find that exercising and learning relaxation techniques (slow breathing; biofeedback; relaxation and breathing exercises such as yoga and meditation; and hypnosis) can go a long way toward fostering overall relaxation and – by extension – help relax abdominal muscles.
Setting aside enough time each day to do something relaxing (a long bath, a walk in the woods, watching a movie) is also helpful.
Surgery
Eventually, twenty-five to forty percent of ulcerative colitis sufferers require surgery to remove their colons.10 When the side effects of drug therapy become too great, if medication and lifestyle changes are ineffective, or when patients suffer colon rupture, massive bleeding, severe illness (toxic megacolon), or serious risk of cancer, surgery becomes the only option for relief.
Although it happens rarely, sometimes severe ulcerative colitis complications make surgery a necessity. Pyoderma gangrenosum – blue-red, puss-filled skin sores – or severe blood clotting in the deep veins of the limbs are examples of complications that would necessitate surgery.
While surgery can sometimes eradicate ulcerative colitis, it often requires removal of the entire colon and rectum (proctocolectomy). Post proctocolectomy, one of two procedures is carried out to facilitate the elimination of solid food waste:
- Ileostomy – an ostomy (operation to create an opening from an area inside the body to the outside) is performed, opening the side of the abdomen. The end of the small intestine (the ileum) is then brought out onto the surface of the skin to construct a stoma, (a mouth-like opening). The size of a quarter, the stoma is normally located in the lower right part of the abdomen near the waistline. Waste travels through the small intestine, exiting the body via the stoma. An external pouch is worn over the opening to collect waste, and is emptied by the patient.
- Continent ileostomy – an ostomy is performed, using the ileum to create a pouch inside the lower abdomen. Waste empties into the pouch, which is then drained by the patient via a tube inserted into the pouch through a small, leak proof opening in the patient’s side. An external pouch is worn only for a few months post-surgery. One of the downfalls of this procedure is the risk of a malfunction in the leak proof opening, which would require surgery to repair, and/or inflammation of the pouch, pouchitis, treatable via antibiotics.
A third option is available:
Ileoanal anastomosis, or pull-through operation – the diseased part of the colon and inside of the rectum is removed, leaving the outer rectal muscles intact. The small intestine, the ileum, is then attached to the inside of the rectum and the anus, creating a pouch. Preserving part of the rectum eliminates the need to wear a bag, enabling normal bowel movements. Although waste – stored in the pouch and passed through the anus – may be more watery and defecation more frequent than usual, bowel movements are carried out in the usual manner. Pouchitis is a possible complication.
None of these procedures can bring a person with ulcerative colitis back to their original state of health prior to the onset of illness. Nor is each operation appropriate for all sufferers. Each procedure has benefits and risks, and the type of surgery chosen will depend on the severity of the disease, the patient’s needs and lifestyle, and which operation is most likely to foster the highest quality of life.
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Notes:
1. MayoClinic.com, “Ulcerative colitis: Causes,” http://www.mayoclinic.com/health/ulcerative-colitis/DS00598/DSECTION=causes (accessed September 16, 2009).
2. National Institute of Diabetes and Digestive and Kidney Diseases, “Ulcerative Colitis: Causes,” http://digestive.niddk.nih.gov/ddiseases/pubs/colitis/ (accessed September 16, 2009).
3. MayoClinic.com, “Ulcerative colitis: Risk factors,” http://www.mayoclinic.com/health/ulcerative-colitis/DS00598/DSECTION=risk%2Dfactors (accessed September 16, 2009).
4. Ibid.
5. MedicineNet.com, “Ulcerative Colitis,” http://www.medicinenet.com/ulcerative_colitis/page3.htm (accessed September 16, 2009).
6. MayoClinic.com, “Ulcerative colitis: Treatment,” http://www.mayoclinic.com/health/ulcerative-colitis/DS00598/DSECTION=treatments%2Dand%2Ddrugs (accessed September 16, 2009).
7. Medical News Today, “FDA Expands REMICADE (REG) (Infliximab) Indication For Ulcerative Colitis,” 23 Oct 2006, http://www.medicalnewstoday.com/articles/54824.php (accessed September 16, 2009).
8. The Merck Manuals Medical Online Library, “Total Parenteral Nutrition (TPN),” http://www.merck.com/mmpe/sec01/ch003/ch003c.html (accessed September 16, 2009).
9. MayoClinic.com, “Crohn’s disease: Lifestyle and home remedies,” http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=lifestyle%2Dand%2Dhome%2Dremedies (accessed September 4, 2009).
10. National Institute of Diabetes and Digestive and Kidney Diseases, “Ulcerative Colitis: Causes,” http://digestive.niddk.nih.gov/ddiseases/pubs/colitis/ (accessed September 16, 2009).
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