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Rebuff Recounted (The SCD in public)

February 16, 2002

Note: This was written in March 2001 and sent to the e-mail list. It describes a bookstore reading of Understanding Crohn Disease and Ulcerative Colitis.

In 1995 I attended my first Crohn's & Colitis Foundation of America (CCFA) event and found myself in an auditorium full of Inflammatory Bowel Disease (IBD) sufferers listening to two psychologists explain how to reduce personal stress in order not to exacerbate the dread disease: "If you start thinking too much, Quick!! Turn on the radio! Turn on the TV! Put in a movie! . . ."

After this and a talk by a GI we filtered into the marble laden corridor of a corporate office building. I don't remember much, I was 23 and I saw one other person my age, everyone else appeared at least ten years older. At the meeting I handed out one sheet fliers, asking for anyone who had successfully treated IBD by alternative methods. I had recently been hospitalized, the web had yet to take off, and I was desperate. My white paper print-outs were overshadowed by the large pharmaceutical displays, advertisements for drugs and the most convenient surgical appliances. Few people took the flier, I felt disappointed but still resolute. My logic: if hundreds of thousands of people have IBD, at least a dozen must have done something to cure themselves. If I can only find these people, then I can repair my life and get on. This was my first contact with any CCFA-related individuals--they were nice, they let me put out my flier*.

Fast forward. I've been on the diet for three years. In many ways (marriage, graduate school, working in NYC), I moved on with my life--I can actually enjoy my life.

The diet has been ingrained. No need to pass out fliers. Last year, while looking around for recipes, I spoke with Mik and Mike who gave me the go-ahead to take the recipes and organize them for the scdrecipe site. In July 2000, days before putting the site up I attended a family picnic and sat with the aunt of a 2nd cousin--whom I have never met (not blood related). The aunt explained that the cousin, Paul, was 12 years old, and that for the past six years he has suffered from Crohn's Disease (CD). Each night he hooks himself up to a feeding tube. He's the smallest kid in his grade. His brother, a year older, is over a foot taller. I called the cousin. His voice sounded small, defeated. I spoke with his mother. I told her about this diet that had helped me. She'd heard of it. Paul's GI said the diet wasn't good for age, it didn't give Paul enough nutrition. Her GI was "renowned" for pediatric gastroenterology. The mother was a registered nurse, she'd found the best doctor, she had inside knowledge. Her tone of voice told me to watch myself, she was a mother bear and I was stepping close to the cub. I asked what kind of food Paul ate. She lightened up, told me he was able to eat anything he wanted, they wanted him to feel normal at school--not to have body image problems. I wanted to point out that eating anything during the day most likely meant eating food which would not digest, that it hindered any healing, that "normal" kids ate orange-ade and French fries. I held my tongue. The experts had spoken, the mother's mind was made up. Without "legitimate" proof, she would not consider alternatives. This gave me a strong reason to assist in passing along information.

With this cousin in mind, yesterday I attended a second CCFA meeting--a book reading of Understanding Crohn Disease and Ulcerative Colitis held at a Barnes and Noble in Connecticut. The meeting was scheduled for 1 p.m. Over sixty people filled the seats and benches. The CCFA supplied colorful pamphlets. I glimpsed the inside of one and saw a glossy picture of a child on a swing: CCFA Summer camps for children with IBD!

The head of the local chapter who went through significant effort to plan the event looked justifiably pleased with the turnout. She introduced the co-authors of the slim volume, a prominent doctor and an erudite medical journalist who sat up front. Before their introduction I would've guessed the journalist, a former teacher of science writing at Columbia's journalism school, to be the doctor. The journalist became intimate with subject of IBD through 12 years of treatment, including a recent surgery, for his own Crohn Disease. I stood about fifteen feet back, feet planted, and feeling nervous as hell. Until the last year, except for the SCD-list, I rarely shared my Ulcerative Colitis (UC) experience beyond a handful of friends. The audience ranged from mid-twenties to mid-seventies, with most people clustered in the mid-30s, mid-40s, maybe 70% female. If not for this gathering they would be blend in to any shopping plaza weekend full of Costco, Home Depot, and Barnes & Noble consumers. But sitting together they shared the same grim expression. They knew the big wheel turned and it was just a matter of time before: CANCER! SURGERY! Another jug of Go-lytely! The speakers rattled on for about 10 minutes about the unique approach of the book: The author is a sufferer. He has teamed with his prominent doctor, and together, they have put the facts of IBD in a narrative accessible to the layman. . . .*

No one really cared. They knew the "facts". The floor opened up to questions. No one spoke. I feared the book signing would begin without a discussion. I came to say something about diet studies, I wasn't sure what. I raised my hand. I spurted out something about 12 years of colitis, finding the SCD diet three years ago. Feeling better. That 500 people on an e-mail list follow the same diet. That my intestines went from bloody hamburger to normal and what did they think of the book Breaking the Vicious Cycle. They doctor said he had not heard of the book. I told them it was listed in the back of their book. The journalist shrugged, didn't know what I was talking about. I asked why there were no diet studies. The doctor started talking about the cost of studies, how the only people with funding are drug companies, who like "us", want to make money, so they don't do research on diet. I asked about alternative funding. He smiled and gestured toward the local organizer of the event. I give you, the CCFA. I mentioned that they don't respond. The organizer, perhaps a local housewife, frowned.

The doctor remained patient, said the diet may be helping my condition, a fluke. He explained that many patients did well on maintenance medication and visited him only once a year. I pointed out that, according to their book 70% of the CD patients have at least one surgery and that most of these people have multiple surgeries. The only real relief for UC was removal of the intestine. I said, I didn't want to lose any body parts. He nodded and asked for any other questions.

A half dozen hands shot up. The topic moved on. Everyone asked about some type of medication or surgery or new type of camera. I blew my question, too nervous, too fast. After hearing another surgical description from the doc, I wandered the store for a while, there were no copies of Breaking the Vicious Cycle on hand. Eventually I found my way back to the meeting. I planned to wait until the end, to actually get the CCFA contact, perhaps talk to the journalist.

Toward the end of the meeting the doctor blabbed on about bowel transplants and how they're becoming more common. A man in his late thirties/early forties, sitting on a bench, leaned forward on his cane. Ripcord thin, he had long hair and a well-worn Harley shirt. His tired, sad wife sat next to him, placing a strong hand on his bony knee. The man strained to speak, his eyes swirled with gray, they looked two-hundred years old.

"I have to say something. I've had this transplant surgery. It's no good. Don't jump into it. Hold off as long as you can. I didn't want it. They took my intestines . . . a lot of surgeries. They cut 'em out a piece at time. Hold onto them as long as you can. Don't let them do the transplant unless you've lost every last foot [of intestine]."

His wife sat straighter, with a tear at the edge of her eye, she whispered to him, "You've been through so much, so much."

The man strained to get his voice across the room. "Avoid the transplant. It's tough, it's tough . . ."

My thought, judging by the couples' clothes and my dad's executive level stories from a major health insurance company: the guy has been to a teaching hospital where they always try out the latest techniques on lower income patients.

The battered man sitting next to me and the smiling doctor up ahead effected my body chemistry. I felt the adrenaline where the person miraculously lifts the overturned car. I was ready to pick up that car and heave it across the room at the doctor. Seeing no car, I stood with my arms folded on my chest.

The mood of the group became grimmer as the man quickly faded from focus and a woman seated near the Harry Potter sale stack stood up. She directed her words to the doctor. "I was diagnosed 13 years ago. I did OK for a long time, but lately, I haven't been doing as well. The medications aren't working and I wanted to know what you do in this situation."

The smiling doctor confidently answered, "As I said, there is much art in this as science. Often I go back and start my patients at a basic medication, but at a higher level. Then, depending on the situation, we try everything possible. I'm open to all alternatives, if something doesn't work, we regroup and try again. We'll try anything."

He began counting the ways on his fingers: "prednisone, azulfadine, cipro, flagyl, asacol, rowasa . . ." Trying to think of medication number 6 he paused.

Breaking the silence I added, "DIET!"

"Yeah. . . Diet." He nodded as if I was nuts and returned to his count: "Pentasa, 6-MP."

Before going to this meeting every argument and counter-argument for the SCD ran through my head. I knew at all times I would have to remain poised. Unfortunately, I didn't have any practice. As I stood behind the last row of chairs my last words to the doctor spurted out: "You're crazy! I'm glad I'm through with all of this [drugs, surgery]!"

I just needed to hang on a bit longer, be diplomatic, make friends with the journalist, get him to try the diet. Instead I felt foolish. To gather my thoughts, I went looking for a novel recommended by a friend. As I scanned a row in the literary section, an older man (late 60s) from the audience tapped me on the shoulder.

"I want to say that your comments were well received. I've had this condition for 22 years and 3 months ago I went to a naturopath. She put me on vitamins and a special diet.*** I eat 5 smaller meals a day. It's more cooking. But I'm normal. He grinned. I have a life. These guys, that medical group of his, they just push those drugs. Good points you made. Good."

I felt much better, and I found my book****. However, I dumped it back on the rack after seeing balloons hanging from a cash register. Beneath the balloons a sign read: "All proceeds from this register will go to support the CCFA!"'

The point of all this: Thank you, Elaine! For putting out this book despite the opposition and for the reason of doing good for others (see previous journal).'

With hindsight, I would have said that the diet helped and left fliers with the name of Elaine's book and website references.

* One woman did respond who used arnica (homeopathic remedy) to relieve her symptoms. I tried some arnica myself but did not follow up. I don't remember why but I think I was burned out, lying around fetal position, holding my gut--or dwelling in my parents' basement listening to nonstop Metallica, Guns-n-Roses, and Public Enemy, leaning back in a chair, feet on a table, dreaming of a time of feeling healthy--riding my bike through rolling hills, lying in the sun. For hours, I would phase-out and day-dream myself away--only to return to the twisted gut.

** To be fair to the writer, it is a clear and concise representation of the traditional, so called "facts" on IBD: the drug treatments, surgical alternatives, statistics, diagrams of the large and small bowel, how there is not quantitative evidence that diets play a role in IBD, etc.

*** Our conversation was quick and I did not ask about the details of his diet.

**** Murakami's Hard Boiled Wonderland