Adventures with a Rebellious Colon: My Story: The Saga Part 1

I spent the summer of 2009 as an Au Pair in Spain. When I was traveling through Granada to see the Alhambra, I stumbled across a fateful kebab stand. I had one for lunch and went back for another one for dinner because it was so good. Unfortunately, I ended up with food poisoning and I was never the same again. In fact, there has been speculation in the medical community about a possible bacteria that might cause Ulcerative Colitis. Luckily, I got up the next morning and was able to visit the spectacular Alhambra. I then continued on my way to my host family near Valencia.

That summer was very difficult. I suspected that I had Ulcerative Colitis but the only way to diagnose IBD is by a colonscopy, which was obviously not an appealing or affordable option in a foreign country. I wrote home to my parents about my concerns, but they could only try to help me stop worrying because there was nothing to be done.

I have always felt worse in the mornings. Luckily, the girls I took care of went to the golf course in the mornings so the painful hour or so after I woke up did not interfere with my (amazing, duh) Au Pair abilities. I went to the doctor fairly frequently, but I was still embarrassed about talking about my symptoms, so he just gave me some pills to take every day. I still do not even know what they were or if they helped me. Surprisingly, I still consider that summer to be the best summer of my life. My host family was incredibly nice and hospitable, had a pool, and lived a block from the beach. I went to the beach every day and learned how to live the relaxed life, which came in handy when I had nothing to do during my semester off. Most importantly, I was doing what I love best: learning to speak a foreign language and immersing myself in another culture.

The day after I returned to Georgetown, I went to the Student Health Center, which referred me to a Gastroenterologist at Georgetown University Hospital. The saga of getting diagnosed officially began. Initially, my doctors thought I had Celiac disease, which is an allergy to gluten. I set off on a gluten-free diet, an unfortunate mix of foods that make a horrible diet for someone with UC. The UC diet actually avoids high-fiber foods like fruits and vegetables, which are essential for a gluten-free diet. The first time I went into a supermarket when I thought I had Celiac disease I started crying because I saw all the aisles of cookies, bread and pasta that I couldn't eat. Luckily that's not a problem now. It's pretty much the opposite.

And remember, at that point, I hadn't even had a colonoscopy (Didn't I warn you that colonoscopy would be a common word in this blog?) yet! Colonscopy colonoscopy colonscopy. A month after I got back from Spain, I finally experienced the wondrous jello-diet and laxative experience that is a colonoscopy. The results showed left-sided colitis, which means that only the lower portion of the colon (on the left) was ulcerated. Left-sided UC is usually more mild than pan-colitis, which means that the entire colon is ulcerated. My doctor did not prescribe me any medications and simply sent me home. Luckily, I had my good friend Ghislaine, who incidentally happens to have UC as well, to help me process the diagnosis and prepare myself for my new future.

I continued to struggle with delibitating symptoms without treatment as the fall semester advanced, such as internal bleeding, frequent bathroom trips, weight loss, terrible nausea for hours every day and a general lack of interest in food. To just give you an idea of what a day in the life of Emily was like, if I ate anything before 1 p.m. I threw it up. Unfortunately, I am usually hungry as soon as I wake up. Even though I couldn't eat, I was starving and thought a lot about food. Once in class, scoping out the nearest classroom exit in case the urge to throw up got the better of me was the first thing that crossed my mind.

When my parents came to visit me in October, I realized that I had been in denial about how sick I was. I hadn't been assertive enough and I should have asked my doctor about medications right away. I was in such denial that I hadn't even told my parents that I had been diagnosed with UC until they came to visit and there was no way pretending that everything was normal. Somehow, I knew that talking about it would make it seem more real and I didn't want it to take over my identity. A couple weeks later I started taking the pill Lialda, which is used to treat mild to moderate colitis (an aminosalicyate!). The doctor also neglected to tell me that it would take two to three months to even start working. I entered the state of waiting that I associate very closely with having a chronic disease. I seemed to constantly be waiting on doctors to call me back, test results to come back, drugs to work or medical decisions to make. Waiting for five hours to get a ticket to see Obama? Piece of cake!

You probably gathered from the above that I was not entirely happy with my care at Georgetown Hospital. Throughout my medical experiences, I have learned the tremendous importance of personal and emotional attention from professionals whose job description does not include helping patients cope with life-changing diagnoses. For me, having a chronic disease entails more than keeping track of symptoms and progress. It is also coping with having a life different from the one I had always envisioned. When a doctor acknowledges that, it makes a world of difference.

Sometimes I wish that I had not eaten a second kebab, but I also know that I would have probably gotten sick at some point because I have a genetic predisposition. It easy to get caught up in "what if" scenarios and forget that living in the present, despite how difficult it may be, is the best thing I can do.