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Digestive Health and Wellness

One Woman’s Battle to Diagnose Her Mysterious Abdominal Illness

I have always had stomach issues, mostly tummy pain and constipation, but it seemed normal. It was not until I was 17 that I noticed that eating certain foods would give me abdominal pain. I blew it off and thought maybe I had just eaten too much. One day I returned from a beach trip with my mom and had a terrible stomachache. Everything burned and stabbed. I had no idea what happened. I lay down to watch TV and finally fell asleep. In the morning it was mostly gone, so I blew it off, again. However, every day after that, I was in pain.

Naturally, I thought it was the food I was eating. I was 17 years old, eating plenty of junk such as cookies, French fries, and pizza. So I cut out foods one by one. Eventually I was only eating toast and butter in the mornings, rice cakes for lunch, and plain hardboiled egg whites for dinner. This seemed to help, but every day was the same. I would wake up with a little pain, and as the day went on, the pain would build. I lost 15 pounds in the first 2 months.

Looking for answers

I went to my first gastrointestinal (GI) doctor after about 3 months, and he gave me a prescription but no diagnosis. That seemed to help for a little while, until it did not. I went to my second GI doctor about 6 months after that, and he ran a battery of tests, all of which were normal. He told me I had IBS and gave me a different medication.

I asked him in desperation, “But what can I eat?” Promptly, he said, “Anything.” However, that was far from the truth. I continued to eliminate any foods that I thought were causing issues; however, the burning and aching continued daily.

At the end of my sophomore year of college, I changed states, schools, and majors. By this time, I was very sick. I had lost another five pounds and was down to 110 pounds at 5 foot 3 inches. I was eating about 10 different foods, and would still find myself in bed, crying from the pain. Sometimes, I would need to leave my dorm room an hour early to get to class because what should have been a 20-minute walk was much longer as I got weaker every day from not eating. By my senior year, I was eating five foods and sleeping less than five hours a night.

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The right diagnosis

My parents and grandparents watched me get thinner and thinner. Within a month of graduation, I went down another 10 pounds, and now weighed 100 pounds. Finally, after weeks of searching, my mother found me another GI doctor. It was a seven-hour road trip to this doctor’s visit; however, this time, unlike all my other doctor appointments, I was given time to explain my symptoms and tell the story of my 5-year struggle. During this visit, it became clear that I did not really have IBS at all. I had Functional Abdominal Pain Syndrome with occasional constipation.

After working with my doctor, I began feeling better, but those five years had taken their toll. I was still afraid to eat. I was afraid to talk about food, I was afraid to grocery shop for new foods, I was afraid to order foods at a restaurant. I had not eaten any food that I did not prepare in more than five years. I would need to retrain my brain.

I did cognitive behavioral therapy with a trained psychologist every week for three months. It was a slow process; however, a year later, I was eating in the cafeteria with my colleagues. It has been over 10 years since I began my recovery. I am not symptom free. I still take medication, including prescription and non-prescription medications daily, but I am 95 percent pain free and finally able to live my life without fear of food.

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