I have a nephew who has been suffering from IBS for about 3 years. He has been on Prednisone in varying doses since his diagnosis. Where can I find the lastest information of treatment both medical and surgical? Also, who is doing the most research on this disease? I understand there is a new technique on surgical treatment at The Mayo Clinic. Thanks.
REPLY:
I doubt very much that your nephew has IBS since it would never be treated with prednisone. More likely he has a form of IBD, either ulcerative colitis or Crohn's disease.
I'm going to use your letter as an opportunity to post two information files. The first is on Ulcerative Colitis and the second concerns Crohn's Disease. Hopefully, these will address some of your questions or point you towards other sources of additional readings or places to request more information.
ULCERATIVE COLITIS
Inflammatory bowel disease (IBD) is a group of chronic disorders that cause inflammation or ulceration in the small and large intestines. Most often IBD is classified as ulcerative colitis or Crohn's disease but may be referred to as colitis, enteritis, ileitis, and proctitis. Ulcerative colitis causes ulceration and inflammation of the inner lining of the colon and rectum, while Crohn's disease is an inflammation that extends into the deeper layers of the intestinal wall. Crohn's disease also may affect other parts of the digestive tract, including the mouth, esophagus, stomach, and small intestine. Ulcerative colitis and Crohn's disease cause similar symptoms that often resemble other conditions, such as irritable bowel syndrome (spastic colitis). The correct diagnosis may take some time. In ulcerative colitis, the inner lining of the large intestine (colon or bowel) and rectum becomes inflamed. The inflammation usually begins in the rectum and lower (sigmoid) intestine and spreads upward to the entire colon. Ulcerative colitis rarely affects the small intestine except for the lower section, the ileum. The inflammation causes the colon to empty frequently, resulting in diarrhea. As cells on the surface of the lining of the colon die and slough off, ulcers (tiny open sores) form, causing pus, mucus, and bleeding. An estimated 250,000 Americans have ulcerative colitis. It occurs most often in young people ages 15 to 40, although children and older people sometimes develop the disease. Ulcerative colitis affects males and females equally and appears to run in some families.
What Are the Symptoms of Ulcerative Colitis?
The most common symptoms of ulcerative colitis are abdominal pain and bloody diarrhea. Patients also may suffer fatigue, weight loss, loss of appetite, rectal bleeding, and loss of body fluids and nutrients. Severe bleeding can lead to anemia. Sometimes patients also have skin lesions, joint pain, inflammation of the eyes, or liver disorders. No one knows for sure why problems outside the bowel are linked with colitis. Scientists think these complications may occur when the immune system triggers inflammation in other parts of the body. These disorders are usually mild and go away when the colitis is treated.
What Causes Ulcerative Colitis?
The cause of ulcerative colitis is not known, and currently there is no cure, except through surgical removal of the colon. Many theories about what causes ulcerative colitis exist, but none has been proven. The current leading theory suggests that some agent, possibly a virus or an atypical bacterium, interacts with the body's immune system to trigger an inflammatory reaction in the intestinal wall. Although much scientific evidence shows that people with ulcerative colitis have abnormalities of the immune system, doctors do not know whether these abnormalities are a cause or result of the disease. Doctors believe, however, that there is little proof that ulcerative colitis is caused by emotional distress or sensitivity to certain foods or food products or is the result of an unhappy childhood.
How Is Ulcerative Colitis Diagnosed?
If you have symptoms that suggest ulcerative colitis, the doctor will
look inside your rectum and colon through a flexible tube (endoscope)
inserted through the anus. During the exam, the doctor may take a
sample of tissue (biopsy) from the lining of the colon to view under
the microscope.
You also may receive a barium enema x-ray of the colon to determine
the nature and extent of disease. This procedure involves putting
a chalky solution (barium) into the colon. The barium shows up
white on x-ray film, revealing growths and other abnormalities in
the colon. The doctor will give you a thorough physical exam,
including blood tests to see if you are anemic (as a result
of blood loss), or if your white blood cell count is elevated
(a sign of inflammation). Examination of a stool sample can tell
the doctor if an infection, such as by amoebae or bacteria, is
causing the symptoms. If you have ulcerative colitis, you may need
medical care for some time. Your doctor also will want to see you
regularly to check on the condition.
How Serious Is This Disease?
About half of patients have only mild symptoms. Others suffer frequent
fever, bloody diarrhea, nausea, and severe abdominal cramps. Only in
rare cases, when complications occur, is the disease fatal. There may
be remissions (periods when the symptoms go away) that last for months
or even years.
However, most patients' symptoms eventually return. This changing
pattern of the disease can make it hard for the doctor to tell
when treatment has helped.
What Is the Treatment?
While no special diet for ulcerative colitis is given, patients may
be able to control mild symptoms simply by avoiding foods that
seem to upset their intestine. In some cases, the doctor may advise
avoiding highly seasoned foods or milk sugar (lactose) for a while.
When treatment is necessary, it must be tailored for each case,
since what may help one patient may not help another. The patient
also should be given needed emotional and psychological support.
Patients with either mild or severe colitis are usually treated with
the drug sulfasalazine. This drug can be used for as long as needed,
and it can be used along with other drugs. Side effects such as
nausea, vomiting, weight loss, heartburn, diarrhea, and headache
occur in a small percentage of cases. Patients who do not do well
on sulfasalazine often do very well on related drugs known as
5-ASA agents. In some cases, patients with severe disease, or those
who cannot take sulfasalazine-type drugs, are given adrenal steroids
(drugs that help control inflammation and affect the immune system)
such as prednisone or hydrocortisone. All of these drugs can be used
in oral, enema, or suppository forms. Other drugs may be given to
relax the patient or to relieve pain, diarrhea, or infection.
Patients with ulcerative colitis occasionally have symptoms severe
enough to require hospitalization. In these cases, the doctor will try
to correct malnutrition and to stop diarrhea and loss of blood,
fluids, and mineral salts. To accomplish this, the patient may need a
special diet, feeding through a vein, medications, or, sometimes,
surgery.
The risk of colon cancer is greater than normal in patients with
widespread ulcerative colitis. The risk may be as high as 32 times
the normal rate in patients whose entire colon is involved, especially
if the colitis exists for many years. However, if only the rectum
and lower colon are involved, the risk of cancer is not higher
than normal. Sometimes precancerous changes occur in the cells lining
the colon. These changes in the cells are called "dysplasia." If the
doctor finds evidence of dysplasia through endoscopic exam and biopsy,
it means the patient is more likely to develop cancer. Patients with
dysplasia, or whose colitis affects the entire colon, should receive
regular followup exams, which may involve colonoscopy (examination of
the entire colon using a flexible endoscope) and biopsies.
About 20 to 25 percent of ulcerative colitis patients eventually
require surgery for removal of the colon because of massive bleeding,
chronic debilitating illness, perforation of the colon, or risk of cancer.
Sometimes the doctor will recommend removing the colon when medical
treatment fails or the side effects of steroids or other drugs
threaten the patient's health. Patients have several surgical
options, each of which has advantages and disadvantages.
The surgeon and patient must decide on the best individual option.
The most common surgery is the proctocolectomy, the removal of the
entire colon and rectum, with ileostomy, creation of a small opening
in the abdominal wall where the tip of the lower small intestine,
the ileum, is brought to the skin's surface to allow drainage
of waste. The opening (stoma) is about the size of a quarter and
is usually located in the right lower corner of the abdomen in
the area of the beltline. A pouch is worn over the opening to
collect waste and the patient empties the pouch periodically.
The proctocolectomy with continent ileostomy is an alternative to
the standard ileostomy. In this operation, the surgeon creates
a pouch out of the ileum inside the wall of the lower abdomen.
The patient is able to empty the pouch by inserting a tube through
a small leak-proof opening in his or her side. Creation of this
natural valve eliminates the need for an external appliance. However,
the patient must wear an external pouch for the first few months
after the operation. Sometimes an operation that avoids the use
of a pouch can be performed. In the ileoanal anastomosis
("pullthrough operation"), the diseased portion of the colon is
removed and the outer muscles of the rectum are preserved. The
surgeon attaches the ileum inside the rectum, forming a pouch,
or reservoir, that holds the waste. This allows the patient to
pass stool through the anus in a normal manner, although the bowel
movements may be more frequent and watery than usual.
The decision about which surgery to have is made according to each
patient's needs, expectations, and lifestyle. If you are ever faced
with this decision, remember that getting as much information as
possible is important. Talk to your doctor, to nurses who work with
patients who have had colon surgery (enterostomal therapists), and
to other patients. In addition, read pamphlets and books, such
as those available from the Crohn's & Colitis Foundation of America,
before you decide. Most people with ulcerative colitis will never
need to have surgery. If surgery ever does become necessary,
however, you may find comfort in knowing that after the surgery,
the colitis is cured and most people go on to live normal, active
lives.
ADDITIONAL READINGS:
General patient information fact sheets: "Bleeding in the Digestive Tract" and" Crohn's Disease" National Digestive Diseases Information Clearinghouse 2 INFORMATION WAY BETHESDA, MD 20892-3570 Brandt LJ, Steiner-Grossman P, eds. Treating IBD: A Patient's Guide to the Medical and Surgical Management of Inflammatory Bowel Disease. New York: Raven Press, 1989. This book, produced by the Crohn's & Colitis Foundation of America addresses many aspects of treatment and living with inflammatory bowel disease. Hanaver SB, Peppercorn MD,Present DH. Current concepts, new therapies in IBD Patient Care,1992; 26 (13): 79-102. General review article for health care professionals. Steiner-Grossman P, Banks PA, Present DH, eds. The New People Not Patients: A Source Book for Living with IBD Dubuque, Iowa: Kendall/Hunt Publishing Company, 1992. This book for patients includes sections on diagnostic tests, medications, nutrition, coping with employment and health insurance problems, and IBD in children and teenagers, older adults, and during pregnancy. Available from the Crohn's & Colitis Foundation of America.
RESOURCES:
Crohn's & Colitis Foundation of America,Inc. 386 Park Avenue South, 17th floor New York, NY 10016-8804 (800) 932-2423 or (212) 685-3440. The Greater New York Pull-thru Network 62 Edgewood Avenue Wyckoff, NJ 07481 (201) 891-5977 Pediatric Crohn's & Colitis Association, Inc. P.O. Box 188 Newton, MA 02168 (617) 244-6678 Reach Out for Youth with Ileitis and Colitis, Inc. 15 Chemung Place Jericho, NY 11753 (516) 822-8010 United Ostomy Association 36 Executive Park, Suite 120 Irvine, CA 92714 (800) 826-0826 or (714) 660-8624
NATIONAL DIGESTIVE DISEASES INFORMATION CLEARINGHOUSE
2 Information Way
Bethesda, MD 20892-3570
The National Digestive Diseases Information Clearinghouse (NDDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, part of the National Institutes of Health, under the U.S. Public Health Service. The clearinghouse, authorized by Congress in 1980, provides information about digestive diseases to people with digestive diseases and their families, health care professionals, and the public. The NDDIC answers inquiries; develops, reviews, and distributes publications; and works closely with professional and patient organizations and government agencies to coordinate resources about digestive diseases. Publications produced by the clearinghouse are reviewed carefully for scientific accuracy, content, and readability. Materials produced by other sources are also reviewed for scientific accuracy and are used, along with clearinghouse publications, to answer requests.
This etext is not subject to copyright restrictions. The clearinghouse encourages users of this epub to duplicate and distribute as many copies as desired.
NIH Publication No. 95-1597 April 1992
CROHN'S DISEASE
Inflammatory bowel disease (IBD) is a group of chronic disorders that cause inflammation or ulceration in the small and large intestines. Most often IBD is classified as ulcerative colitis or Crohn's disease but may be referred to as colitis, enteritis, ileitis, and proctitis. Ulcerative colitis causes ulceration and inflammation of the inner lining of the colon and rectum, while Crohn's disease is an inflammation that extends into the deeper layers of the intestinal wall. Ulcerative colitis and Crohn's disease cause similar symptoms that often resemble other conditions such as irritable bowel syndrome (spastic colitis). The correct diagnosis may take some time. Crohn's disease usually involves the small intestine, most often the lower part (the ileum). In some cases, both the small and large intestine (colon or bowel) are affected. In other cases, only the colon is involved. Sometimes, inflammation also may affect the mouth, esophagus, stomach, duodenum, appendix, or anus. Crohn's disease is a chronic condition and may recur at various times over a lifetime. Some people have long periods of remission, sometimes for years, when they are free of symptoms. There is no way to predict when a remission may occur or when symptoms will return.
What Are the Symptoms?
The most common symptoms of Crohn's disease are abdominal pain, often in the lower right area, and diarrhea. There also may be rectal bleeding, weight loss, and fever. Bleeding may be serious and persistent, leading to anemia (low red blood cell count). Children may suffer delayed development and stunted growth.
What Causes Crohn's Disease and Who Gets It?
There are many theories about what causes Crohn's disease, but none has been proven. One theory is that some agent, perhaps a virus or a bacterium, affects the body's immune system to trigger an inflammatory reaction in the intestinal wall. Although there is a lot of evidence that patients with this disease have abnormalities of the immune system, doctors do not know whether the immune problems are a cause or a result of the disease. Doctors believe, however, that there is little proof that Crohn's disease is caused by emotional distress or by an unhappy childhood. Crohn's disease affects males and females equally and appears to run in some families. About 20 percent of people with Crohn's disease have a blood relative with some form of inflammatory bowel disease, most often a brother or sister and sometimes a parent or child.
How Does Crohn's Disease Affect Children?
Women with Crohn's disease who are considering having children can be comforted to know that the vast majority of such pregnancies will result in normal children. Research has shown that the course of pregnancy and delivery is usually not impaired in women with Crohn's disease. Even so, it is a good idea for women with Crohn's disease to discuss the matter with their doctors before pregnancy. Children who do get the disease are sometimes more severely affected than adults, with slowed growth and delayed sexual development in some cases.
How Is Crohn's Disease Diagnosed?
If you have experienced chronic abdominal pain, diarrhea, fever, weight loss, and anemia, the doctor will examine you for signs of Crohn's disease. The doctor will take a history and give you a thorough physical exam. This exam will include blood tests to find out if you are anemic as a result of blood loss, or if there is an increased number of white blood cells, suggesting an inflammatory process in your body. Examination of a stool sample can tell the doctor if there is blood loss, or if an infection by a parasite or bacteria is causing the symptoms. The doctor may look inside your rectum and colon through a flexible tube (endoscope) that is inserted through the anus. During the exam, the doctor may take a sample of tissue (biopsy) from the lining of the colon to look at under the microscope. Later, you also may receive x-ray examinations of the digestive tract to determine the nature and extent of disease. These exams may include an upper gastrointestinal (GI) series, a small intestinal study, and a barium enema intestinal x-ray. These procedures are done by putting the barium, a chalky solution, into the upper or lower intestines. The barium shows up white on x-ray film, revealing inflammation or ulceration and other abnormalities in the intestine. If you have Crohn's disease, you may need medical care for a long time. Your doctor also will want to test you regularly to check on your condition.
What Is the Treatment?
Several drugs are helpful in controlling Crohn's disease, but at this
time there is no cure.
The usual goals of therapy are to correct nutritional deficiencies;
to control inflammation; and to relieve abdominal pain, diarrhea,
and rectal bleeding. Abdominal cramps and diarrhea may be helped
by drugs. The drug sulfasalazine often lessens the inflammation,
especially in the colon. This drug can be used for as long as
needed, and it can be used along with other drugs. Side effects
such as nausea, vomiting, weight loss, heartburn, diarrhea, and
headache occur in a small percentage of cases. Patients who do
not do well on sulfasalazine often do very well on related drugs
known as mesalamine or 5-ASA agents. More serious cases may require
steroid drugs, antibiotics, or drugs that affect the body's immune
system such as azathioprine or 6-mercaptopurine (6-MP).
Can Diet Control Crohn's Disease?
No special diet has been proven effective for preventing or treating
this disease.
Some people find their symptoms are made worse by milk, alcohol,
hot spices, or fiber. But there are no hard and fast rules for
most people. Follow a good nutritious diet and try to avoid any
foods that seem to make your symptoms worse. Large doses of vitamins
are useless and may even cause harmful side effects.
Your doctor may recommend nutritional supplements, especially for
children with growth retardation. Special high-calorie liquid formulas
are sometimes used for this purpose. A small number of patients may
need periods of feeding by vein. This can help patients who temporarily
need extra nutrition, those whose bowels need to rest, or those
whose bowels cannot absorb enough nourishment from food taken by
mouth.
What Are the Complications of Crohn's Disease?
The most common complication is blockage (obstruction) of the intestine. Blockage occurs because the disease tends to thicken the bowel wall with swelling and fibrous scar tissue, narrowing the passage. Crohn's disease also may cause deep ulcer tracts that burrow all the way through the bowel wall into surrounding tissues, into adjacent segments of intestine, into other nearby organs such as the urinary bladder or vagina, or into the skin. These tunnels are called fistulas. They are a common complication and often are associated with pockets of infection or abcesses (infected areas of pus). The areas around the anus and rectum often are involved. Sometimes fistulas can be treated with medicine, but in many cases they must be treated surgically. Crohn's disease also can lead to complications that affect other parts of the body. These systemic complications include various forms of arthritis, skin problems, inflammation in the eyes or mouth, kidney stones, gallstones, or other diseases of the liver and biliary system. Some of these problems respond to the same treatment as the bowel symptoms, but others must be treated separately.
Is Surgery Often Necessary?
Crohn's disease can be helped by surgery, but it cannot be cured by surgery. The inflammation tends to return in areas of the intestine next to the area that has been removed. Many Crohn's disease patients require surgery, either to relieve chronic symptoms of active disease that does not respond to medical therapy or to correct complications such as intestinal blockage, perforation, abscess, or bleeding. Drainage of abscesses or resection (removal of a section of bowel) due to blockage are common surgical procedures. Sometimes the diseased section of bowel is removed. In this operation, the bowel is cut above and below the diseased area and reconnected. Infrequently some people must have their colons removed (colectomy) and an ileostomy created. In an ileostomy, a small opening is made in the front of the abdominal wall, and the tip of the lower small intestine (ileum) is brought to the skin's surface. This opening, called a stoma, is about the size of a quarter or a 50-cent piece. It usually is located in the right lower corner of the abdomen in the area of the beltline. A bag is worn over the opening to collect waste, and the patient empties the bag periodically. The majority of patients go on to live normal, active lives with an ostomy. The fact that Crohn's disease often recurs after surgery makes it very important for the patient and doctor to consider carefully the benefits and risks of surgery compared with other treatments. Remember, most people with this disease continue to lead useful and productive lives. Between periods of disease activity, patients may feel quite well and be free of symptoms. Even though there may be long-term needs for medicine and even periods of hospitalization, most patients are able to hold productive jobs, marry, raise families, and function successfully at home and in society.
ADDITIONAL READINGS:
General patient information fact sheets: "Bleeding in the Digestive Tract" and "Ulcerative Colitis" National Digestive Diseases Information Clearinghouse 2 Information Way Bethesda, MD 20892-3570 Brandt, LJ, Steiner-Grossman, P, eds. Treating IBD: A Patient's Guide to the Medical and Surgical Management of Inflammatory Bowel Disease. New York: Raven Press, 1989. General guide for patients with sections on treatment and descriptions and drawings of surgical procedures. Available from the Crohn's & Colitis Foundation of America. Hanauer, SB, Peppercorn, MD, Present, DH. Current concepts, new therapies in IBD Patient Care, 1992; 26(13): 79-102. General review article for health care professionals. Steiner-Grossman, P, Banks PA, Present, DH, eds. The New People Not Patients: A Source Book for Living with IBD. Dubuque, Iowa: Kendall/Hunt Publishing Company, 1992. Book for patients with sections on diagnostic tests, medications, nutrition, coping with employment and health insurance problems, and IBD in children and teenagers, older adults, and during pregnancy. Available from the Crohn's & Colitis Foundation of America.
ADDITIONAL RESOURCES:
Crohn's & Colitis Foundation of America, Inc. 386Park Avenue South, 17th Floor New York, NY 10016-8804 (800) 932-2423 or (212) 685-3440 Pediatric Crohn's & Colitis Association, Inc. P.O. Box 188 Newton, MA 02168 (617)244-6678 Reach Out for Youth with Ileitis and Colitis, Inc. 15 Chemung Place Jericho, NY 11753 (516) 822-8010 United Ostomy Association 36 Executive Park, Suite 120 Irvine, CA 92714 (800) 826-0826 or (714)660-8624
NATIONAL DIGESTIVE DISEASES INFORMATION CLEARINGHOUSE
2 INFORMATION WAY
BETHESDA, MD 20892-3570
The National Digestive Diseases Information Clearinghouse (NDDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases, part of the National Institutes of Health, under the U.S. Public Health Service. The clearinghouse, authorized by Congress in 1980, provides information about digestive diseases to people with digestive diseases and their families, health care professionals, and the public. The NDDIC answers inquiries; develops, reviews, and distributes publications; and works closely with professional and patient organizations and government agencies to coordinate resources about digestive diseases. Publications produced by the clearinghouse are reviewed carefully for scientific accuracy, content, and readability. Materials produced by other sources are also reviewed for scientific accuracy and are used, along with clearinghouse publications, to answer requests. This etext is not subject to copyright restrictions. The clearinghouse encourages users of this epub to duplicate and distribute as many copies as desired.
Publication No. 95-3410 October 1992
--
Bruce Sckolnick, M.D.
NOTICE: OFCN is not engaged in the rendering of professional medical services. The information contained on this system or any other OFCN system should not supplant individual professional consultation. It is offered exclusively as a community education service. Advice on individual problems must be obtained directly from a professional.
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