Shelley Martin, a Manhattan accountant, was in her
mid-60s when she learned after a routine colonoscopy that she had Crohn’s
disease, a chronic inflammatory disorder characterized by abdominal pain and
diarrhea. She said when friends learned of her diagnosis, several said “How can
that be? Crohn’s starts in childhood.”
اضافة اعلان
Actually, this often debilitating disease, which typically
affects the area where the small intestine joins the colon, can occur at any
age. “If you’re born with the right genetics, it can first appear in young kids
to people in their 80s or 90s,” said Dr Joseph D. Feuerstein,
gastroenterologist at Beth Israel Deaconess Medical Center in Boston. “It’s
rising in incidence and prevalence throughout the world,” he said, and
gastroenterologists are still trying to figure out why it shows up when it does
in different people.
Crohn’s disease was first described in 1932 by Dr Burrill B.
Crohn and colleagues and is one of two chronic inflammatory bowel diseases
(ulcerative colitis is the other) that have no specific cause. Together, they
afflict about 3 million people in the United States. Crohn’s in adults starts
on average at age 30, with peak incidence between ages 20 and 30 and a second
peak around age 50. The disease tends to run in families, but the genetic risk
is not large. One in 10 to 1 in 4 patients have a close family member who is
affected, and only half of identical twin pairs get it.
In decades past, Crohn’s was thought to primarily afflict
people of Ashkenazi Jewish descent, but “we’re now seeing it everywhere — in
Asia, Latin America, all over the world,” said Feuerstein.
Experts speculate that its rise is somehow linked to
industrialization and a Western-style diet rich in meats and processed foods.
Some suggest a link to living in an overly hygienic environment that may prompt
the immune system to attack the body’s healthy tissues instead of infectious
organisms.
And even though the bowel is the disease’s most prominent
target, “it can also involve the eyes, joints, liver, skin,” said Dr Gary R.
Lichtenstein, gastroenterologist at the
University of Pennsylvania School of Medicine. “It’s not one distinct disorder — over 200 genes have been identified
as associated with Crohn’s. It results from a complex interaction between the
environment and genetics” and can be initiated by an individual’s response to
exposures ranging from infectious agents to medications.
Two well-established instigators are the frequent use of
nonsteroidal anti-inflammatory drugs (
NSAIDs), like ibuprofen and naproxen, and
cigarette smoking. Both can trigger onset of the disease or cause flare-ups in
those who already have it, Lichtenstein said. In fact, he said, smoking not
only creates a greater risk of developing Crohn’s, it can also result in a more
virulent course of the disease.
Unlike Martin, who had no inkling anything was wrong until
her routine colon exam, most people with Crohn’s have unexplained symptoms for
many months or even years before the correct cause is determined. Following the
diagnosis, she said she developed “mild but annoying diarrhea,” but she considers
herself relatively lucky given the potential complex of symptoms associated
with Crohn’s.
In addition to abdominal pain and diarrhea that can be
bloody, possible signs and symptoms include unexplained weight loss, anemia,
fever, fatigue, nausea and vomiting, loss of appetite, eye and joint pain, and
tender, red bumps on the skin. In children, the disease can result in a failure
to grow.
Prompt diagnosis and appropriate therapy to suppress
inflammation in the digestive tract are extremely important because a delay can
result in scar tissue and strictures that are not reversed by medication,
Feuerstein said. Another possible serious complication is development of a
fistula — an abnormal connection between different organs, like the colon and
bladder, requiring surgical repair that, in turn, can cause further intestinal
damage.
Understandably, considerable stress, anxiety and depression
can accompany the disease and may even cause a worsening of symptoms. Last
summer, when Martin’s disease suddenly raged out of control after she was
treated with a drug to keep breast cancer at bay, severe diarrhea kept her tied
to the bathroom in her Manhattan apartment. Lichtenstein said the class of
drugs Martin took, called checkpoint inhibitors, is especially challenging to
Crohn’s patients who may have to choose between trying to prevent a recurrence
of
cancer and suppressing their intestinal disease because the cancer drugs can
sometimes cause an inflamed colon.
If severe inflammation and debilitating symptoms are present
when Crohn’s is diagnosed, patients are usually treated with steroids to bring
the disease under control before they are placed on medication specific for the
condition. “Steroids,” Feuerstein said, “are a Band-Aid to arrest the
inflammatory process, but then we have to do something to suppress the disease
and allow the body to heal.”
Sometimes before starting medication, patients are
temporarily placed on a restricted liquid diet to rest the bowel and give it a
chance to heal, said Lichtenstein, the lead author of the latest management
guidelines for Crohn’s disease developed by the American College of
Gastroenterology.
There are now multiple drug options for treating Crohn’s,
although keeping symptoms under control often involves trial and error. For
example, following Martin’s diagnosis five years ago, the specialist she consulted
told her there were four possible oral drugs to try in succession. Each worked
for several months, but after the fourth drug no longer relieved her symptoms,
she was given an infusion of a remedy called Entyvio, which she said “worked
immediately like a miracle.”
Entyvio, the trade name for vedolizumab, is what’s known as
a biologic, a drug made from living cells that is typically given by infusion
or injection, one of several such drugs now available for Crohn’s. It acts
specifically on the gut to counter inflammation, and with her colon still
inflamed, Martin needs to be treated with the drug every four weeks. If this
one stops working, she can try one of the others.
Martin knows, however, that Crohn’s is not curable and most
patients have to stay on medication indefinitely. That can create yet another
stumbling block. The biologics are very costly, averaging over $100,000 a year,
and although they are usually covered by insurance, there is a steep copayment.
To afford the therapy, many patients depend on copay assistance programs
administered by the drug companies, Feuerstein said.
However, as Martin recently learned, Medicare will cover the
expense if she gets the infusion in a hospital or if her doctor can arrange for
a nurse to come to her home to administer the drug.
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