I was diagnosed with ulcerative colitis, UC, in 2000, after being sick on and off for a year. It’s been almost 11 years since that day, which also happened to be the first day of my high school sophomore year.
I didn’t know what I was in for at that time. And I did not want to. I told one friend that I now owned “this apparently chronic stomach thing” and that’s why I missed school. Two weeks later, when I was complaining about stomach pain she said, “Eww your stomach is STILL messed up?” Whoever dubbed ‘inflammatory bowel disease’ was so NOT thinking of the insecure 14 year old teenage girl who wanted to describe it to her friends. My first thought when my doc told me was: “Something’s wrong with my bowel? Wait what’s a bowel!” I couldn’t know where to begin answering my friend's question--other than to definitely not mention the colonoscopy I had just received. I didn’t breathe a word of the UC to anyone for another 4 years. High school is tough enough without having to deal with an embarrassing medical condition.
During those 4 years, I displayed my creative genius and gave people spectacularly elaborate and diverse reasons... “I played hooky with my mom and we went to a Bollywood concert.”… “We extended our Vegas vacay to play out my hot streak. I cleaned out Circus Circus.”… and later ... “I decided to try out for American Idol – me and William Hung became totally tight.”... all excuses for why I could not hang out as often, why I quit the tennis team or even why I did not go to school as often as I wanted to.
My family was equally confused--they didn’t know what caused this multisyllabic disease. And neither did my doctor. No one we knew had this, and everyone in my family (we Indians tend to have extensive family trees) was healthy as a horse; I felt like the outlier sheep. I kept hearing the voices of a few well-intentioned relatives, who felt helpless by the fact that they couldn’t help, and who would suggest that perhaps I was causing my own condition with stress and suggested Ayurveda, meditation, homeopathy... I started to believe it was my fault, and at least that was an answer. I didn’t think ahead to life after age 18 (myopia, I am here to stay!) because I could not fathom doing adult things when I could not even take care of myself. I only knew that I didn’t want to be one of those people who fade away to the back of the proverbial classroom. So I assumed everything would magically be ok by 18 because it had to--I could not imagine a life of this forever.
4ish years later…
Due to my colitis, I chose a local college over my dream school, which later proved to be the best decision. By the time I got to college, I didn’t remember what living without UC was and had adjusted my view of what normal meant for me. After a while, you forget that life is not supposed to be this hard!
Towards the end of my sophomore year of college, my dad did a Google search and found the Specific Carbohydrate Diet, SCD, which had apparently helped many folks with IBD. With a full course load on top of being dog sick, I didn’t have the time, energy, or quite frankly the interest to cook so my parents would pack me up with a week’s food supply - cooked from scratch - every weekend. It was as much an experiment for them as it was for me. I for one thought the diet sounded nuts. The diet had two strikes against it: 1. My doctor said, “Food has nothing to do with colitis.” 2. My parents were all for giving it a try. So I was doubly suspicious. I was tired of false hope and I had never really noticed that diet played a role since all foods seemed to make me sick, though by this time I was trading milk for Lactaid.
And so began my first attempt to change my diet with a skeptical heart – how could something as simple as a diet ‘fix’ me when doctors, tests, a million pills, and then… placebos, meditation, yoga, Himalayan holy water, acupressure, homeopathy, well wishes, and good thoughts hadn’t? Yes, some of these did help. But none of them led to a significant lasting difference in my symptoms.
Continued...