In the process of starting a blog for a Paleo grocery shopping and menu design consulting small business, I began writing an entry about who I am and what my experience has been. It made me reflect on several things I really haven't thought about in a long time.
When I was a freshman in college, I was eating a horrid diet to "get in shape" for volleyball. I kept a food log obviously, as I became OCD about counting calories and mitigating fat intake. At 5'5 I weighed >110. My daily meals consisted of oatmeal, Kashi cereal, 100 calorie english muffins, peanut butter, and an assortment of Splenda based products. Writing this literally makes me want to go back in time and strangle myself.
About 7 months into this diet I developed a fistula, which is an infection in your intestine that tunnels out to your skin. It is the most horribly painful thing I have ever experienced, and I had it for over a year.
It was when I went to see a doctor about the fistula that I underwent exams that found evidence of Crohn's in my small intestine. The doctors said that I must just have "the fistula version" of the disease, and that unless I went on medication I would just keep getting more and more of them.
So they put me on 6-MP, until it gave me pancreatitis. Then Remicaid, until I went into anaphylactic shock during an infusion. Then I went on Humira, until my stomach muscle was paralyzed and my liver counts were out of control.
They told me not to have surgery to close the fistula because the infection was being fed by the disease and it wouldn't close, just tunnel back through time after time.
I was in too much pain to move, sleep, or think. There was such horrific stabbing all over my body that all I could do was stand in the shower with hot water running over me and cry. Every breath I took was like an onslaught of needles. The doctors just kept running more tests, finding nothing wrong, and sending me to another specialist.
Finally, after spending 5 days in the hospital and the nurses telling my mother I just had depression and probably hypochondria, she told them to f*ck off and took me home and off of the Humira. They told her that my Crohn's would rage out of control and I would just deteriorate. She said she'd wasted enough time listening to their advice and was done with it.
That's when we went to one of her college roommate's houses who had two daughters with Crohn's who followed the Specific Carbohydrate Diet (similar to Paleo, a bit outdated). I continued to get better and better. Fast forward to four years later with ZERO medicine, no symptoms of Crohn's OR gastroparesis, and a very, very happy life.
At what point are the GI's and nutritionists and liver specialists and every other specialized autoimmune doctor criminally negligent? Throughout this entire experience I had the best doctors at Massachusetts General Hospital telling me that my diet of oatmeal, bananas, rice, and white toast was OPTIMAL, that food was not the issue. My body had a problem that needed pharmaceutical fixing.
The fistula was superficial and after suffering with it for a year it closed immediately after the surgery all of the doctors told me would never work. I've never had another one, and I never will. I had a family predisposition to intestinal illness and a sh!t diet that triggered an autoimmune response. I could not even begin to quantify the amount of suffering I endured because of the medicines these people put me on, which padded their own wallets. Humira? $5,000 a bi-weekly injection. Remicaid? $10,000 an infusion.
Paleosphere, how do we stick it to Big Pharma? How do we find the people who are suffering like I was before they fall into the medical industry trap?