Upper Canada Lower Bowel Society
Warning: this is a long one!
After all these years with Ulcerative Colitis, I finally found a support group that seems to be into the same things I am. Specifically: controlling the disease through diet. I don’t know what took me so long!
Although I don’t plan to ignore my doctor, I’ve had enough experience with the disease to completely disagree with what many doctors have told me: that food has nothing to do with it.
With my first episode of UC, I just took steroids, as the doctor ordered, and it cleared up after a few months. The second episode was worse. My doctor, although nice enough, gave me practically no information about the disease at all. I had already researched it myself, of course, but he would tell me absolutely nothing, except: eat normally. Well, the steroids weren’t working, and things were getting worse. I decided I should follow the diet my GP put my kids on when they were sick with diarhea, the BRAT diet: Bananas, Rice, Applesauce and Toast. I must say, I ate a whole lot of toast. And my symtoms got worse and worse.
Finally, after Reid and I had a particularly horrible 5th anniversary (due to my illness), and beginning to realize that I may no longer be able to work, I blew a gasket and called my doctor in a frenzy. He just gave me another internal exam, told me to continue the steroids and sent me on my way. So I went to a naturopath. He put me on lots and lots of natural medication, which did nothing. But I will be forever grateful to him for two things: he suggested I go off wheat and eggs in case it had something to do with allergies, and he asked me if I ever heard of a book written by Elaine Gottschall called Breaking the Vicious Cycle. I know now the allergy business is silly, but it made me stop eating all that toast. And behold!! I kid you not — within 24 hours there was a HUGE difference in my life. Within 24 hours, I was, inconceivably, raking up leaves with my son and jumping in them, all afternoon, without having to run to the bathroom even once!! I still had a little trouble in the mornings and afternoons, but I seemed to have my life back!! I ran out and bought the book, read it cover to cover, had Reid read it, and agreed to try the diet. I stuck to the diet like glue. It’s called the Specific Carbohydrate Diet (SCD), and basically, one does not eat starches (bread, pasta, potatoes, etc.), sugar or milk (cheese and yoghurt is ok).
Within 3 to 4 months, all symptoms disappeared and I slowly came off the steroids. The scientist part of me said: this is not necessarily a cure, it could still be coincidence, but I’m sure the diet helped the symptoms. I went to another doctor for a 2nd opinion. He was absolutely wonderful. He explained all sorts of things to me, put me at ease about the increased risk of cancer, and told me: Of course that diet helps! But he did point out that the diet helps the symptoms, but is not a cure. At the time, I believed him, although now I’m not so sure. At least I had found a doctor that didn’t go crazy when I told him of the diet I was on. I decided I would switch doctors if I had another episode.
In August 2000, just as I started my 1-year sabbatical, I got sick again. (While I was at the Toronto Exhibition with my family, of all places, I had to run to the bathroom and I knew right there and then that it was back 🙁 ) I went to my doctor, we tried different medications, and ended up on steroids yet again. At first, I went on the diet again, but I was convinced it wasn’t a cure, so I didn’t stick to it very carefully. After going on mega-doses of steroids, the illness cleared up twice: once at Christmas and once at Easter. Funny. Both times I ate way too much sugar (eating all those cookies I baked at Christmas, and eating all that chocolate at Easter.) Of course, the illness came back. In May, I decided that if I had been on the diet, I probably would have gotten better. So I went back to the diet: although perhaps not whole hog. But as of a few weeks ago, I decided I need to really stick to it. I’ve been ill for a year now. And each successive episode has gotten worse.
Support found at last!
I had lent my book, Breaking the Vicious Cycle, to a girlfriend but needed a muffin recipe out of it. So I started searching for SCD muffin recipes on the web and found a wonderful SCD site. As a result, I joined a mailing list for people on the diet, and also make contact with people in Toronto on the diet. They call themselves the Upper Canada Lower Bowel Society. Just love the name!! It’s wonderful to know that I have others I can speak to about the disease and diet.
I’ve also become a somewhat of a proponent for reducing evil complex carbohydrates from ones diet. (This from the woman whose youngest son eats nothing but complex carbs and protein. It drives me crazy!) I really do think complex carbs are evil. Not just because of my illness now, but because I was diabetic during my last pregnancy. It made me realize how many complex carbs the general public eats. According to the Canadian Food Guide, someone my size should have 6 servings of grain products a day. Do you know how little 6 serving is???? That’s 6 slices of bread!! By having a hamburger and fries, you’ve had 4 to 5 servings already!!
All that said, one may ask me what my favourite foods are: Pasta! Pizza! Sushi! Bagels! Chocolate Cake!! But I sincerely hope I have the strength to not eat these foods at all for a couple of years, and after that only in severe moderation. (Those of you who know me well are laughing now, saying “Yah right!!”) But I can hope!