Use Caution When Considering Non-Standard Remedies for Crohn's

"I've just had it!" she exploded. "I took all this rat poison, and I still had to have another operation."

Since I've also had five surgeries for Crohn's disease, I can relate to this reaction. Although the path is different for each patient, at some point, every one I've met in 25 years has questioned whether to add alternative medicine to his or her regimen.

The inflammation in some patients stays dialed down most of the time with a typical drug such as Asacol. However, in others, even a pharmaceutical cocktail of immunosuppressives, with infusions of drugs like Remicade and Humira added to the menu, fails to stop damage from the disease for more than short periods of time. For us, repeated surgery to removed diseased areas of the digestive tract has historically been the only remedy.

According to livingwithcrohnsdisease.com, various types of alternative therapies have been commonly used to supplement standard treatments. These include relaxation training, vitamin therapy, biofeedback, acupuncture and homeopathy. The site cautions that it's important to check with your gastroenterologist before undertaking any of them, however. You might also want to call your health insurance carrier if you have one to find out exactly what's covered.

Patients use relaxation therapy for many conditions. Training involves learning ways to relax muscles, meditate and practice yoga. Additional benefits include stress reduction and management of the chronic pain from which some Crohn's patients suffer.

There's a fair amount of research funded to locate a link between vitamin therapy and inflammatory bowel disease (IBD). One of the larger projects seeks to learn whether certain nutrients that yield antioxidant enzymes that can help neutralize the free radicals found in individuals with Crohn's disease.

The Mayo Clinic reports that more than half the IBD patients suffering from either illness - Crohn's disease or ulcerative colitis - have tried some type of alternative therapy. The most common were herbal and nutritional supplements, probiotics and fish oil. The Clinic also suggests that one third of these patients never tell their doctors they're using these alternative or complementary medical options.

Why try any of them? Other than frustration when drugs don't control the disease, many Crohn's patients are uncomfortable with the side effects of the most powerful medicines or of a long-term course of steroids such as Prednisone.

Before starting on immunosuppressive drugs in 1992, I was a firm believer in herbal supplements. However, after my second small-bowel resection, I quickly realized that I would need to coordinate use of the so-called "healing nutrients" with my doctor because of possible adverse interactions among all the drugs.

It's really just common sense. If you're taking drugs to tame an overactive immune system, why on earth would you take herbs or other supplements marketed to increase immunity?

On of the most controversial alternative therapies in the news today is the Specific Carbohydrate Diet (SCD), discussed in detail at the web site of the Crohn's Colitis Foundation of America (CCFA). This regimen was developed and marketed by biochemist Elaine Gottschall. After researching changes that occurred in the intestinal wall of IBD patients, in 1994 she wrote Breaking the Vicious Cycle: Intestinal Health Through Diet. The SCD is based on this book.

The diet is a meal plan free of any type of grain, lactose and sucrose. It's a lot more restrictive than even a gluten-free diet. For a patient whose food choices are already severely limited due to a surgically shortened small intestine, it could prove impossible to follow.

The SCD evolved as the result of a belief that undigested carbohydrates stimulate the production of acids and toxins that harm the small intestine, also wiping out the enzymes that permit digestion of carbohydrates and absorption. Gottschall saw the process as an endless circle.

The diet has received mixed reviews. Some doctors admit to having patients who swear by it. Others point to the difficulty in following it and insist there's little medical evidence to determine the degree to which it helps some individuals. One of the problems in tracking the success of any treatment is the fact that Crohn's disease waxes and wanes on its own for most patients. Pinpointing the reason it quiets down is often impossible.

Having made friends with nearly all the super-drugs used to treat Crohn's patients and having experienced very limited success, I still shy away from all alternative treatments except meditation and other relaxation techniques. Life with a shortened small bowel brings uncertainty as to how supplements will be absorbed and how to calculate an accurate dose.

It's better to be safe than sorry, I reason.