Rapid diagnosis and appropriate therapy to suppress inflammation in the digestive tract are extremely important, as delay can lead to scar tissue and strictures that medication cannot reverse, said Dr. Flint. Another possible serious complication is the development of a fistula – an abnormal connection between organs such as the colon and bladder that requires surgical repair, which in turn can cause further damage to the bowel.
Understandably, significant stress, anxiety, and depression can accompany the illness and even worsen symptoms. Last summer when Mrs. Martin was sick suddenly After being treated with a drug to keep breast cancer at bay, she was out of control. She was tied to the bathroom in her Manhattan apartment due to severe diarrhea. Dr. Lichtenstein said the class of drugs Ms. Martin was taking, called checkpoint inhibitors, posed a particular challenge to Crohn's patients, who may have to choose between trying to prevent cancer from recurring and suppressing their bowel disease, as the ones Cancer drugs can sometimes cause inflammation of the colon.
If the inflammation and debilitating symptoms are severe when Crohn's disease is diagnosed, patients are usually treated with steroids to control the disease before they are given drugs that are specific for the disease. "Steroids," said Dr. Feuerstein, "are a band-aid to stop 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 Dr. Lichtenstein, the lead author of the latest Crohn's Disease Management Guidelines developed by the American College of Gastroenterology.
There are now several drug options for the treatment of Crohn's disease, although symptom control is often trial and error. For example, after Ms. Martin's diagnosis five years ago, the specialist she consulted told her that four possible oral medications could be tried one after the other. Each worked for several months, but after the fourth drug failed to relieve her symptoms, she was given an infusion of a drug called Entyvio, which she said "worked like an instant miracle".
Entyvio, the trade name for vedolizumab, is a so-called biological agent, a drug made from living cells that is typically administered by infusion or injection. It is one of several such drugs that are currently available for Crohns. It works specifically on the intestines to reduce inflammation, and since her colon is still inflamed, Ms. Martinne must be treated with the drug every four weeks. If this doesn't work anymore, she can try one of the others.
However, Ms. Martin knows that there is no cure for Crohns and that most patients are on medication indefinitely. That can create another stumbling block. The biologics are very expensive, averaging over $ 100,000 a year. Although they are usually covered by insurance, there is a large co-payment. In order to afford therapy, many patients rely on co-pay assistance programs administered by the drug companies, said Dr. Flint.
As Ms. Martin recently learned, Medicare pays the cost if she receives the IV in a hospital or if her doctor can arrange for a nurse to come to her home to administer the drug.