There is no known cause or cure for Crohn’s disease. Despite the marketing of various new medications and therapies in the last 10 years, most patients don’t receive a diagnosis until they’re suffered the severe symptoms of pain, diarrhea, gas and overall weakness like the flu for years. The disease can occur anywhere between the mouth and the anus.
There are several reasons why it’s so tough to get a diagnosis:
1. Crohn’s mimics other conditions. Many of the symptoms are similar to those associated with irritable bowel syndrome (IBS), food allergies and gluten intolerance. Severe symptoms sometimes mimic those of serious bacterial infections such as c. diff. or are mislabeled as the digestive tract merely trying to adjust after a course of antibiotics for an infection. A flare is also sometimes assumed to be the flu or more serious conditions such as nanoviruses or noroviruses.
2. There is no direct hereditary link. Statistics show us that most patients have a 25 percent chance of having a close relative with either Crohn’s disease or its cousin, ulcerative colitis. However, while researchers have identified gene markers for the condition, the medical community has not been able to use this information very effectively to diagnose the illness.
3. Inflammations come and go. Crohn’s disease is an inflammation that in advanced stages causes ulceration, perforation and even abscesses in the digestive tract. However, flares wax and wane on a daily basis. Patients typically feel very ill one day, then report feeling very tired but much better the next. Standard diagnostic tools such as barium studies, colonoscopies and even capsule endoscopies often take weeks to schedule. By that time, the disease has often calmed down. If it has not progressed to the layer of the gut visible to radiologists but is merely present in a buried layer of tissue, the chances are that it will be missed.
4. Health insurance limitations are a factor. Insurers often drag their feet as far as approving diagnostic procedures. For example, a colonoscopy is an outpatient procedure yet generates a bill of several thousand dollars. Patients and their physicians are often forced to keep trying to justify the necessity of a procedure or repeating one performed earlier in the year. For those without medical insurance, the cost of barium studies, colonoscopies, ultrasound or capsule endoscopies (the patient swallows a tiny camera) is prohibitive.
5. Misinformation. The premier source of information on the two inflammatory bowel diseases, Crohn’s and ulcerative colitis, is the Crohn’s Colitis Foundation of America at ccfa.org. Although most physicians, radiologic technicians, medical technologists and nurses have now heard of Crohn’s disease, there are still way too many misconceptions floating around that interfere with a correct diagnosis. Some patients are told that they undoubtedly have IBS or that their illness is caused by emotional factors. Others are mistakenly advised that they must be eating way too much fast food or some other type of offending nourishment.
6. Symptoms might start outside the gut. Crohn’s has many extra-intestinal manifestations that can occur years before symptoms are obvious in the gut. Rectal and anal fissure are very typical even if the patient has Crohn’s in the small bowel, the most common area of involvement. Other confusing symptoms include an eye inflammation called iritis, skin conditions and one or more types of arthritis.
While a life-changing condition, Crohn’s disease is seldom fatal. Patients who suspect it might be the source of their digestive problems should insist that they see a gastroenterologist, who is a specialist in digestive conditions. If initial tests fail to provide an actual diagnosis, the patient should press for further testing or even change physicians if health insurance permits it.