Originally published in The Ottawa Citizen November 18, 2003
Original Title: Into the bowels of hell

Mandy (not her real name) came to the office complaining of nausea and intense abdominal cramping with bloody mucousy diarrhea. She could not sleep or eat because of the severe pain. Investigations led to a diagnosis of Crohn’s disease.

Crohn’s disease causes mild to severe inflammation of the digestive tract in children and adults. It attacks the digestive tract from the mouth to the anus. This chronic condition cycles between remission and relapses. Many people can live long normal lives with treatment. Indeed some will live symptom-free for years. Remission rates after the first attack range between ten to 20 per cent.

Symptoms of Crohn’s include weight loss, mouth sores and ulcers, fever, diarrhea, fatigue, mild to intense intestinal cramping, nausea, bowel obstruction and blood in the stool. Extraintestinal (outside the intestine) signs and symptoms include skin rashes in 15 per cent of Crohn’s sufferers, red eyes in five per cent, joint pain and at times liver damage and gallstones.

Other diseases like ulcerative colitis, irritable bowel syndrome among others can share similar characteristics. Colonoscopy, barium imaging tests and the presence of specific symptoms help differentiate each condition and provide an accurate diagnosis.

The cause of Crohn’s disease remains elusive. It tends to run in families and affect certain groups of people (women, Caucasians and Jewish people) more than others suggesting a genetic predisposition. The incidence of the disease is greater in Europe and North America than in Asia and Africa.

The current working theory states that the immune system of genetically susceptible people over-reacts when exposed to a triggering substance (certain bacteria and foods may play a role). The immune system erroneously causes inflammation and intestinal damage.

The disease’s complications depend upon the affected site. Often, inflammation occurs at the junction between the small intestine (ileum) and the beginning of large intestine (cecum). Intestinal damage can create tunneling passages between the intestine and other organs (fistulas), intestinal wall perforation and narrowing and blockage of the digestive tract. Splitting of the skin (fissures), ulcerations, abscesses and fistulas around the rectum and anal region occur in 35 to 45 percent of patients with Crohn’s disease.

The choice of medical therapy depends upon the site of inflammation and symptoms. Your doctor will provide several options and detail the risks and benefits of each. The common medications include sulfasalazine, 5-Aminosalicylates, antibiotics, steroids and newer class of drugs called immunomodulators like Remicade.

The choice of foods and diet plan is a critical adjunct to therapy. Many people can identify foods that exacerbate their disease. Without a proper dietary plan, many suffer pain, cramps, bloating and diarrhea. Patients tend to shun food with prolonged discomfort. Fifty to 70 per cent of Crohn’s patients become malnourished. Regular assessment of nutritional status can prevent the complications of malnutrition. A dietitian’s expertise is critical to this success. Patients should not restrict their dietary intake unless they are instructed to do so by their doctor or dietitian.

Malnutrition is especially problematic for children and adolescents. It can delay the onset of puberty, delay growth and lead to osteoporosis from reduced calcium intake among other problems. It can be psychologically devastating to the adolescent because it interferes with their normal growth and development. Lacking a sense of normalcy, their self-esteem suffers. They may have difficulty participating in activities and shun the normal social interactions necessary to develop interpersonal skills and a sense of self.

Regular exercise will maintain fitness and help prevent osteoporosis that occurs in up to 30 per cent of patients. Smoking worsens Crohn’s disease as well as the use of ibuprofen (Advil, Motrin) and nonsteroidal anti-inflammatory drugs (NSAIDs).

There is an increased risk of colorectal cancer but it can take many years to develop. Regular scheduled colonoscopy screening programs can help identify precancerous and cancerous changes before they lead to devastating effects.

Although surgery does not cure Crohn’s disease, 80 per cent of patients will require it to treat bleeding, repair fistulas, bypass obstructions and remove severely damaged portions of the intestine. 85 and 90 percent of patients are symptom-free during the year following surgery, and up to 20 percent of patients are still symptom-free 15 years after surgery. Long-term medical and dietary therapy is critical to keep this condition under control or in remission.

Indeed, despite medical treatment Mandy required surgery to remove part of her damaged intestine. Although not curative, it did help her return to a normal life. She remains vigilant and takes medications to keep the disease under control and at times, in remission.

For more information, please visit the Crohn’s and Colitis Foundation of Canada at http://www.ccfc.ca/en/index.html

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© Dr. Barry Dworkin 2003