Below I have culled together the notes of renowned sociologist A. Buen Magen.* He has listed several stages an IBD sufferer may experience. As far as I can tell these stages are not meant to be discrete: a person may go through one or all of the stages--and in any order. However, these listings cover the majority of cases. (As for myself, I tend to hover in stages 5, 7, and 8:)
- Conformity at the onset of IBD (Inflammatory Bowel Disease). Faced with a detrimental and disturbing health condition, the person accepts and conforms to their gastroenterologist's explanations and treatments. There is a strong desire to follow the doctor's treatment and let the healing "take care of itself." To assist the healing, the individual is directed to take medications such as prendisone, azulfadine, ASA, and Asacol.
- Frustration with treatment. The individual experiences fluctuations in his/her health as the IBD goes through varying stages of remission and flares. The person finds that health does not return to normal with medication. Often, the doctor informs the person that there is little they can do to control their health other than continue to take medication, avoid stress, and not eat foods such as raw vegetables and nuts which may irritate an inflamed intestine. In addition, they may be given allergy tests and directed to cut down on lactose consumption. Faced with lack of control over their daily health, the individual experiences increased stress and frustration. Not knowing of any other options, the person continues to take varying types and doses of medication.
- Learning/Questioning. The patient begins a process of self-education carried out in local bookstores, on the web, and in the library. The facts begin to settle in: Studies have shown that people with IBD are five times more likely to develop colon cancer than the general public.** All of the drugs have side effects. Azulfadine, one of the mildest drugs, may cause headaches and lowers the male sperm count. Prednisone, the least preferable, but one of the most prescribed, will cause headaches (from high blood pressure), osteoporosis, mood changes and, "less" seriously, facial mooning, nausea, etc. Other options, which do not guarantee eradication of the disease involve ostomy bags and related surgical appliances. Faced with the prospects of continued disease, increased chance of colon cancer, a myriad of drug side effects, and the alternative of organ removal, the person asks "Is there a better way?" and begins to explore "alternative health."
Most major book stores carry self-help books on vegetarianism, macro-biotic diets, yoga, acupuncture, chiropractic, ayurvedic medicine, tai chi, reiki, medical alternatives, ad inifinitum. As the person begins to explore different modalities, he/she may find some things that ease symptoms and some which do not help. When questioned on alternative methods, the doctor may dismiss all of the techniques, or say, "If something works, then use it, but remember, there's no cure. You'll have this disease the remainder of your life."
- Finding the SCD. Within the tomes of diet books, the person comes across the Specific Carbohydrate Diet, or SCD, described in Breaking the Vicious Cycle by Elaine Gottschall. There's a story behind the author's motivation to write. Elaine's daughter Judy was diagnosed with a severe case of ulcerative colitis at the age of four and a half. By the age of eight, despite years of treatment with cortisone and sulfonamides, Judy's condition deteriorated--upon examination over a dozen doctors said that her intestines would have to be removed. Almost out of hope, Elaine and her husband brought their daughter to Dr. Haas, an elderly pediatrician whom the New York Times described as a "pioneer in pediatrics".*** Dr. Haas recommended what is now known as the Specific Carbohydrate Diet. Within one year on the diet, Judy had been weaned off of all medications and returned to full health. From that time on, Judy continued to live a healthy life while following the diet. However, Elaine became increasingly frustrated as she heard of friends and acquaintances with IBD who underwent experiences with prednisone and surgery. In these situations she would relate her daughter's experiences with the diet. However, she could not recommend any scientists or health professionals who would or could describe the science behind the diet: Dr. Haas had passed away at the age of 94.
Taking it upon herself to help IBD sufferers, Elaine returned to school to learn why the diet worked. Not having taken a class since 1939, she returned to high school at the age of 45 to brush up on math. After completing this step, Elaine realized that to continue and undertake undergraduate and graduate studies would take many years. However, she did not deviate from her goal and spent ten years in universities: First at Montclair State College in New Jersey, where she received her bachelor's degree in 1973, graduating Magna Cum Laude. From there, she spent a year in the Department of Graduate Studies in Nutrition at Rutgers, The State University of New Jersey.
In 1975, she became a member of the Department of Cell Science at The University of Western Ontario's Zoology Department and spent four years there investigating the effects of various sugars on the digestive tract. She obtained a Master of Science degree in that Department in 1979. Results of her work are published in the Journal, Acta Anatomica 123: 178 (1985). For the year following, Elaine worked in the Department of Anatomy of the University of Western Ontario investigating the changes that occur in the bowel wall in inflammatory bowel disease.
In 1987, she completed work on a book titled Food and the Gut Reaction. In it she described the mechanisms which perpetuate IBD and how to use diet to wean off of medication and return the body to a healthy state. While the first half of the book explained the biology and chemistry behind the diet, the second half contained recipes. Ms. Gottschall and her husband, who gave his wholehearted support to her endeavors, self-published the book. In two years, it barely sold 200 copies. However, Ms. Gottschall, now a Canadian resident, continued to speak vigorously about the diet and was invited to appear on a talk show--the Canadian version of Oprah Winfrey. Elaine's segment ran for 8 minutes on national TV. In the next 10 days 23,000 copies of the book were sold and word began to spread. In 1994, she re-published the book under the name Breaking the Vicious Cycle. Currently in it's eighth printing, the book has sold over 3 million copies. Ms. Gottschall, now in her 80s, continues to lecture about the diet. Her house contains a collection of thousands of thank-you notes from people who use the diet to control IBD as well as countless e-mails.
When the individual who has read through the alternative health books hears about the diet described in Breaking the Vicious Cycle, he/she will find further information on the internet: the dozens of positive reviews on Amazon's website and the grass-roots websites started by people on the diet which now cover eight languages. The majority of doctors dismiss the diet, most often saying it hasn't been proven or hasn't been studied. However, they cannot say it isn't healthy. The individual finding the book gives it a try and sees his/her health increase dramatically. (This applies to nearly all of those with Crohn disease and 80% of those with ulcerative colitis.)
- Encounter/Active-Resistance. Thrilled at having control over his/her health, the individual returns to the doctor and/or local CCFA (Crohn Colitis Foundation of America) chapter to inform them about the benefits of the SCD. The individual wants others to know about the diet and experience the same results. In 99% of cases, this individual, even if he/she was a dues paying member of the CCFA , will be dismissed. The person will be told their health is due to a luck, a temporary effect, or that it is plain wrong. This will anger the individual. Often undaunted, the person will tell other SCD users about their experience and how it's time to let the world know: to get on TV, to tell the magazines.
Depending on how long the person has had IBD, he/she may became angry with the traditional healthcare system, immersing himself/herself in alternative health care modalities, and dismissing "the system" as corrupt.
- Immersion-Emmersion. As part of the immersion process, the individual communicates with other people who use the SCD diet. The angry person emphasizes that something must be done: that the alternative of a diet must be given to IBD sufferers. More experienced members on the list will tell the person to go ahead but that it's tough. Although hundreds of letters have been written before, the doctors and CCFA will not do anything. In addition, no one will fund a study of the diet. Most funding comes from pharmaceutical companies and their is no profit motive to study dietary changes as a method of disease treatment. People may remain at the level of anger but most proceed to stage 7 or stage 8.
- Active-resistance/Tolerance. Realizing the diet will not be immediately accepted by the mainstream, these individuals remain active on a local level: telling friends and relatives about the diet, answering questions on e-mail lists, and working on web sites. Others may be more active but they have learned to channel any anger into productive activities. In addition, even if their doctor does not endorse the diet, most people continue to get annual check-ups from a gastroenterologist.
- Internalization (the most common stage). The SCD becomes a habit. There may be a low level of active resistance such as talking about the diet to an acquaintance who asks whether they should use it. However, the individual uses his/her energy to vigorously engage in activities enjoyed in his/her pre-IBD life--without having to worry about digestion.
* A. Buen Magen made his observations while riding on a train from Grand Central to New Haven, CT.
** "Colon Cancer and IBD: Are You at Risk?", from http://ibscrohns.about.com
*** Quote from a New York Times obituary after Dr. Haas's death on November 30, 1964