Authors: Rita Baron-Faust,Jill Buyon
The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On With Your Life (31 page)
Crohn’s can develop gradually over a period of years before you have obvious symptoms. Even when there are some symptoms, you may have thought you were simply prone to diarrhea. In some cases, however, Crohn’s can come on suddenly.
The most common symptoms are frequent bowel movements, diarrhea, and abdominal pain, often in the lower right side of the abdomen. In contrast to ulcerative colitis, in which the pain may be intermittent and relieved by a bowel movement (see
page 262
), if you have Crohn’s disease, pain will be more constant and will worsen after you eat. The diarrhea is accompanied by a sense of urgency, and it may come on at night. Abdominal pain after eating is also a symptom of
diverticulitis
, the formation of tiny inflamed sacs in the lining of the intestine (usually the lower part of the colon). Diarrhea and abdominal pain are also symptoms of
celiac disease
, an autoimmune attack on the bowel triggered by a reaction to gluten in wheat (see
pages 270
to
284
).
It’s not uncommon for women with Crohn’s to be initially diagnosed with irritable bowel syndrome (IBS) because of the shared symptoms of chronic diarrhea and abdominal pain after meals, remarks Christine L. Frissora, MD, an associate professor of medicine at the Weill Medical College of Cornell University. Adding to the confusion, there’s an increased incidence of irritable bowel syndrome (IBS) among women with Crohn’s.
“IBS has been called a ‘spastic colon,’ but we think it may be caused by a loss of synchronization between the small and large intestines. Instead of working in concert with each other, one of the intestines may have a stronger reaction to a food or stressful event, and that can cause altered emptying of the bowel,” explains Dr. Frissora. “To be diagnosed with IBS, you must have had abdominal discomfort that’s relieved by defecation, associated with a change in stool consistency and frequency, or mucus in the stool and bloating. About a third of women have a diarrhea-predominant form of IBS, a third have more constipation with their IBS, and the remaining third alternate between the two. However, in Crohn’s disease, in addition to such bowel dysfunction, you have associated symptoms of inflammation.”
Those symptoms include fever, fatigue, and weight loss due to malabsorption, she adds. If your fever is low-grade (up to 100.4 degrees), you may not even be aware you’re running a temperature. You may feel lethargic and irritable, but not feverish. If your Crohn’s is flaring or severe, you can run a high fever (up to 104 degrees), with night sweats. Diverticulitis also causes fever, abdominal tenderness, and strictures.
Crohn’s can cause sores or ulcerations anywhere in the digestive tract or where there are mucous membranes, including the mouth. These include
aphthous ulcers
, tiny shallow sores that often occur between the gum and the lower lip, or along the base of the tongue. While canker sores last a week or two, Crohn’s ulcers can last for months.
Some women, like Laura, may develop ulcers in the area between the vagina and rectum, or around the vagina itself. Bleeding may be serious and persistent, leading to anemia. In some cases, a
fistula
(an abnormal, tunnellike opening) can occur between the rectal and vaginal areas or between the bowel and the skin near the anus. (Fistulas can also occur internally between adjacent areas of the bowel.)
“Recurrent oral and genital ulcers also occur in a rare inflammatory condition called
Behçet’s disease
, which is also thought to be autoimmune,” notes Dr. Frissora. (
Behçet’s
is more common in Mediterranean countries, the Middle East, and in Japan, where the disease is a major cause of blindness.) Other symptoms it shares with Crohn’s are eye inflammation and raised, red bumps called
erythema nodosum
, often on the shins and ankles (which can also be a sign of increased disease activity in IBD).
Because the intestinal tract isn’t absorbing nutrients properly, you may have deficiencies of vitamin B
12
, calcium, vitamin D, and protein. Malabsorption causes you to lose weight, and unexplained weight loss is another key symptom of Crohn’s (and
ulcerative colitis
).
Sores, cracks (fissures) in the anal area, and rectal bleeding can occur in Crohn’s, as well as hemorrhoids, skin tags in the anal area, or cauliflower-shaped mounds of thickened tissue; the skin tags and areas of thickened skin can both resemble hemorrhoids. There may be pain in the
perianal
area, abnormal discharge of mucus and pus (if there’s an internal rectal abscess), or discharge of pus and fecal material due to false openings in the rectum called
sinus tracts
.
In up to 30 percent of women, Crohn’s can also cause symptoms in other areas of the body, most commonly joint pain. Between 10 to 20 percent of people with IBD have inflammatory joint disease in their extremities, with the joint pain accompanying (or following) bowel inflammation. In fact, IBD may be causing your arthritis
without
producing bowel symptoms, possibly by the migration of immune cells related to inflammation to the joint lining (
synovium
). Unlike rheumatoid arthritis (which can cluster with Crohn’s), the joint pain associated with IBD is not usually symmetrical and doesn’t usually produce changes seen on x-rays. Treating Crohn’s usually improves joint problems. Some of the same medications used to treat RA are also used to treat Crohn’s.
Women with Crohn’s can also develop kidney stones, gallstones, or liver disease. An autoimmune liver disorder,
primary sclerosing cholangitis (PSC)
, the blockage of bile ducts by scar tissue, occurs in a small percentage of women with Crohn’s (though it’s more common in ulcerative colitis). Fifteen percent of women may have skin rashes, including erythema nodosum, usually on the legs. You may also experience eye inflammation (
uveitis
) or pain, light sensitivity, blurred vision, and dry eye.
Women with Crohn’s may already have bone loss when they first present to a physician, remarks the Mayo Clinic’s Dr. Kane. “Crohn’s disease in itself can cause osteoporosis, due to inflammatory cytokines and malabsorption of calcium and vitamin D. Many Crohn’s patients have also avoided dairy products because it makes their diarrhea worse, so they don’t get enough calcium to begin with,” she says. “Bone mass studies in IBD patients have found that anywhere from a third to 60 percent will have low bone mass, without any
other kinds of risk factors.” (Steroids and other medications used to treat Crohn’s can cause or worsen bone loss, as well.)
A child or adolescent with Crohn’s may have growth problems or delayed puberty. Menstrual periods and fertility may be normal, but you may find yourself avoiding sex because of pain in the anal or genital area.
The diagnosis of Crohn’s disease is made on the basis of symptoms and findings of diagnostic tests. Blood tests can pick up systemic inflammation, anemia, vitamin deficiencies, and other problems related to Crohn’s, but sigmoidoscopy and a barium x-ray of the colon (and sometimes an intestinal biopsy) will reveal the classic inflammation and ulcerations.
The
Crohn’s Disease Endoscopic Activity Index of Severity (CDEAIS)
measures the percentage of affected areas of mucosal surface in six segments of the intestines (the ileum, right and left colon,
transverse
and
sigmoid
colon, and the rectum), but the index doesn’t really correlate to the severity of disease activity. A series of diagnostic tests, including stool analysis (to detect bleeding and other causes of inflammation, such as parasites or bacteria), may be needed to confirm the diagnosis and assess the extent of Crohn’s.
Crohn’s disease involves all of the layers of the bowel, and a lot of times the inflammation never hits the surface. So if you do a sigmoidoscopy or a barium study you may not see any changes in the mucosa. If you just do a CT scan, all you might see instead is a thickening of the bowel. But if it’s just in a short segment, a single CT may not be able to pick it up. So a combination of tests is often needed.
Flexible sigmoidoscopy
uses a lighted, flexible fiber-optic scope inserted through the rectum to examine the lower areas of the sigmoid colon. The inner lining of the colon can be seen clearly through the scope. If you have Crohn’s disease, your doctor may see patches of red, inflamed tissue, ulcerations, and fistulas (making the diagnosis more likely, especially if it’s a rectal-vaginal fistula). Most cases of Crohn’s involve both the small and large intestine; 15 percent of cases may involve only the colon (and can be mistaken
for ulcerative colitis). However, in Crohn’s there may be “skip areas” where patches of diseased bowel occur next to areas of normal tissue and the rectum is usually not affected.
Sigmoidoscopy can be done in a physician’s office without much discomfort (some people may need a mild tranquilizer). The only preparation you’ll need is a mild enema with tap water to cleanse the colon one or two hours before the test. A more thorough examination of the entire colon can be done with colonoscopy, a similar fiber-optic procedure (see below).
A
barium x-ray (barium enema, barium swallow)
is an x-ray of the colon using barium, a contrast agent that shows up as white on the x-ray. It’s usually done if you have symptoms but a sigmoidoscopy is negative or inconclusive. You’ll be asked to drink a solution to clean out the colon and take a mild enema an hour or two before the test. Just before the x-ray, a small amount of barium is infused into the colon through the rectum. The contrast agent will coat the inside of the colon (which will look like a white tube on the x-ray). In Crohn’s, the normally rounded hills and valleys in the surface of the colon are flattened, and there may be tiny ulcerations or fissures. Diverticula show up as protrusions on the outer surface. The test is performed in a radiology facility.
An
upper GI series
uses barium and X-rays to examine the small intestine, the terminal ileum, and the beginning of the colon. There’s no prep involved; you simply don’t eat anything after midnight the night before so food is less likely to be present in the ileum. On the morning of the test, you drink a small amount of liquid barium (it’s chalky, but comes in several flavors). It takes about two hours for the barium to pass through the loops of the small intestine and reach the colon. In Crohn’s, the normal pattern of the intestinal lining (including the villi) is often distorted or lost, and there may be narrowing of the opening inside the intestines (the lumen). Additional x-rays may be taken using a compression paddle on the abdomen to separate adjoining loops of bowel, so the end portions of the ileum can be seen clearly (this is similar to the way compression is used when you get a mammogram, so that the tissues of the breast are more visible on x-ray).
Colonoscopy
involves a more detailed examination of the entire colon using a very flexible fiber-optic
endoscope
(
endo
means “inside”). Because the scope must pass through all the pretzel-like loops and curves of the colon, sedation is used to make the procedure more comfortable. The fiber-optic scope used for the procedure magnifies the image of the colon’s inner lining
up to ten times its normal size so it can be thoroughly examined. Photographs and videotapes can even be made during the procedure by mounting a small camera on the viewing end of the scope. The scope is hollow, so a biopsy device can be passed through it.
You’ll be asked to eat a liquid diet for the 48 hours before the test (with only clear liquids during the preceding 24 hours) to minimize the chances of any fecal residue in the colon. In Crohn’s disease, colonoscopy may reveal patterns of inflammation (the characteristic “skip” pattern), ulcerations or other lesions, and loss of the normal folds in the inner surface (those folds are needed to thoroughly extract moisture and nutrients). The scope can reveal polyps, and biopsies can be taken. The biopsy may reveal granulomas, a microscopic granular-like lesion caused by an influx of inflammatory cells, seen in up to 10 percent of people with Crohn’s. Ulcerations may bleed (and blood may be present in a stool sample). The lining of the colon can also take on a cobblestone-like texture in Crohn’s.
Colonoscopy is an extremely valuable test, but it needs to be done by a qualified gastroenterologist. It’s only performed in Crohn’s when adequate information can’t be obtained from other diagnostic tests, or if cancer or polyps are suspected, because inflammation can make the colon more prone to injury during the procedure.
Capsule endoscopy
is a fairly new imaging technique used in Crohn’s that involves swallowing a small video capsule (larger than a standard medicine capsule) that takes thousands of photographs of the inside of the esophagus, stomach, and the small intestine as it works its way down. You’ll need to do the same bowel prep as for a colonoscopy so the photos will be clear. The capsule actually contains video chips that function as cameras, a miniscule battery, a radio transmitter, and even a teeny light bulb. The photos are taken quickly and transmitted to a small receiver, downloaded into a computer and then reviewed by your physician. After the capsule has done its job, it’s simply flushed down the toilet with fecal matter. Just as with sigmoidoscopy, this technique only images part of the GI tract, the images can be blurry because the capsule is moving and, like any battery-powered device, the battery can die (average battery life is only about eight hours). You’ll need to swallow a dummy capsule first to make sure there are no blockages to trap the capsule. If it does get stuck, it can be retrieved surgically.
7
The technique is also used in Celiac disease and in other conditions.
Gastroscopy
involves the examination of the lining of the esophagus, stomach, and the uppermost portion of the small intestine (
duodenum
) with a thinner fiber-optic scope. Crohn’s disease can cause inflammation and ulceration of these areas, and the test can help distinguish between Crohn’s and ulcerative colitis. Sedation is usually given to reduce discomfort and quiet your gag reflex as the scope is passed down the throat.
Computed tomography (CT)
scans can help detect abnormalities in the intestinal mucosa and other areas in Crohn’s. Radioactive dyes may also be used to assess the extent of inflammation. Other imaging techniques, like transabdominal ultrasound or magnetic resonance imaging (MRI), may also provide useful information.
Complete blood count (CBC)
can reveal iron-deficiency anemia due to bleeding, vitamin B
12
deficiency due to malabsorption, or depletion of red blood cells. You may also have a low platelet count (thrombocytopenia), a high platelet count (thrombocytosis), or a high white blood cell count, a sign of inflammation.
C-Reactive protein (CRP)
is a marker of inflammation found in the blood that will be elevated in Crohn’s. CRP is also measured to determine whether a patient is in remission.
Erythrocyte sedimentation rate (SED rate)
will be elevated because of inflammation (see
pages 32
to
33
) in Crohn’s, but CRP is more helpful in determining disease activity.
Tests to measure antibodies associated with Crohn’s disease can be useful for separating Crohn’s from ulcerative colitis and other disorders. They include antibodies against baker’s yeast (
anti-Saccharomyces cerevisiae
), present in 50 to 70 percent of Crohn’s patients (but only 6 to 14 percent of people with UC). Antibodies to
pancreatic antigens (PABs)
, a protein in pancreatic secretions, are seen in 31 percent of Crohn’s patients (and only 4 percent of people with UC). Testing for these antibodies is not yet routine, but may be useful in some cases.
Janine’s story continues:
Two years after my surgery I was put on sulfasalazine. First they got me into remission with steroids, then they tapered me off the prednisone and put me on Pentasa, and I’ve been doing really well with it. I have not let my disease interfere with my life, apart from watching what I eat. I have been active in support groups and on the Internet. I think that getting to know
other people with inflammatory bowel disease helps tremendously. You need that emotional support
.
