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LOOKING WITHIN for strength
by Christine Turpin UF junior Robin Simpson and her roommate caught the flu in January 1998. Unlike her friend, Robin couldn't shake the bug. A week later, she still felt dizzy, weak couldn't keep any food down.
She still can't.
Discovering "I can remember my mother's exact words: 'You're going to come home for two weeks and we are going to get you well and then you can go back to Gainesville.'" Robin balked at the idea, "I didn't want to quit because I knew I probably wouldn't come back." Eventually, though, she agreed that withdrawing from school was best for her. The doctors in Orlando began by testing for some of the more serious underlying conditions that could explain her symptoms: cancer, Crohn's disease (a chronic inflammation of the intestines), neurological problems, diabetes. The tests themselves were physically and emotionally exhausting: blood work... a gastrointestinal endoscopy, in which a thin lighted tube is threaded through the esophagus and into the stomach... an MRI scan of her brain. "I was praying for them to find something, so they could fix it, and I would be better," she says. But the diagnostic tests revealed nothing out of the ordinary. The day after her MRI scan, Robin faced the biggest trial of all -- a test of faith that changed her life completely. "Saturday morning, I couldn't walk without help. I could not even hold my head up to throw up. My dad would get me to the bathroom and I would just look like a rag doll, with my head falling down. "(He) had my shoulders and my mom had my hair. Afterward, they tried to get me ready to go to the hospital. I told them, 'No, I (don't) want to go.' "That night, I can remember I was crying, and I told them good-bye. It was just the weirdest feeling in the world. I thought I was dying. I made my peace with God and told him that whatever happened, I was fine with it." The next morning, Robin woke up and could walk on her own. "When you have something like that happen to you, you realize how valuable your family and friends are. Life is way too precious." The experience helped her to gather the inner strength she needed to cope with the trying experiences to come. Robin also matched the profile for another common condition associated with vomiting and weight loss - young female college student. Robin's doctor wanted to make sure she didn't have an eating disorder, so she was sent to see three psychologists and a psychiatrist.
"I really resented the psychologists, because I didn't need to go. But if I said that I didn't want to go, I was so scared that they were just going to assume I had an eating disorder, and I was denying the help." The psychological evaluations found nothing in Robin's personality that would suggest anorexia or bulimia. Then there was the atomic egg test -- and a glimmer of hope that the source of the problem had been found. The test, known as the gastric emptying test, involved eating a few small bites of an egg laced with barium, a radioactive substance. Then Robin had to lay perfectly still on an examining table for hours as medical technicians took a series of x-rays tracing the passage of the egg through her stomach. Normally, food passes through the stomach within two to three hours. But it took close to five hours for the egg to pass through Robin's stomach. Robin's doctors in Orlando decided to call in the specialists, and in April, she was sent back to Gainesville and Shands. After looking over results from tests performed in Orlando, however, the powers that be at the gastrointestinal clinic at Shands decided her condition wasn't serious enough for an immediate visit. She was told to return in July for an appointment. "When my parents told me, I was pretty upset and I threw a couple things and yelled some obscenities. My logic was that I was going to the (Shands) emergency room every two weeks to get hydrated. I had bruises on my wrists and hands from the IV and I was losing weight. So, you would think that would be enough to be seen right away," Robin says with a grimace. "I looked like a druggie." By mid-May, Robin's weight had dropped to 98 pounds and she was in jeopardy of malnutrition. Seeing her worsened condition, the doctors at Shands began further testing to find the source of her nausea and vomiting, and to try treating it. Finally, the doctors threaded a tube through Robin's nose, down her esophagus, and into her stomach to monitor its nerve activity. A nearby computer relayed small electrodes through the tube, which dispersed inside her stomach. "That was the worst experience ever," recalls Robin, "because the tube would constantly scratch the back of my throat and irritate it." But the test gave Robin's doctors the answer they were looking for -- gastroparesis a rare digestive disorder in which the nerve endings inside the stomach become destroyed, preventing the movement of food through the stomach and into the small intestines.
The doctors inserted the first feeding tube in her nose, down her throat, through the stomach and directly into the small intestines. Bypassing the stomach in this way, the nutrients in her liquid lunch (and breakfast and dinner) could be absorbed by her body and her weight loss could be curbed. "We called my tube 'Norma the Nose-Hose," says Robin. "I took it all very jokingly and made fun of my condition a lot so that nobody else, especially my mom, wouldn't feel so depressed. I think that is what helped me get through it, by not taking it too seriously." When it was clear the food-through-a-tube treatment was working and Robin began gaining weight, her physicians recommended a more permanent solution: a surgically-inserted feeding tube. The surgeons made two incisions near her navel and inserted a small pink tube that protruded two inches outside her stomach. The tube was hooked to a drip containing liquid nutrients. She called it "Felix the Feeding Tube." As much as she hated it, Robin also realized that Felix was helping her to lead a more normal life. She was able to go home from the hospital and feed herself at her convenience. "I was getting nutrition again. It may not have been the perfect life, but it gave me a chance to get back into school." Felix the Feeding Tube helped get Robin back on her feet again, but there were drawbacks. "My stomach would swell so much when I was using the tubes. Sometimes when I went to Publix, I would have to walk around with my hand on my back, so people asked me all the time if I was pregnant." Then she developed an infection around the incision. When the infection cleared up, she had Felix removed, choosing instead to maintain her weight by eating what she could. "I eat anything and everything I can get my hands on," Robin says. "From the time I come home [from classes] to the time I go to bed, my face is in that refrigerator. I just love food. Even if it does not stay down for long, it is just good to be able to taste a hamburger or some yogurt." Robin's weight usually stays about 110 pounds. During a good week, it can rise to 117. During a bad week, her weight can plummet to as low as 98 pounds.
Researchers like Sue Fitzwilliams give Robin reason to believe things will get better. A coordinator in UF's department of medicine, Fitzwilliams is conducting research on a mechanical device known as the gastric pacemaker, which is attached to the outer stomach lining to mimic natural stomach pacing. It changes the pulse waves sent throughout the stomach cavity. Robin could be a candidate for the procedure because she has had severe gastroparesis for longer than a year now, which is key to gastric pacing studies, Fitzwilliams says. "I am definitely considering the pacer," Robin says. "And my mom seems to be going for the idea of me taking part in Sue's study. I would just like to find out a little more about it before making a decision like that." Though studies for this procedure temporarily were put on hold, pending U.S. Food and Drug Administration (FDA) approval, Fitzwilliams is still hopeful that this device will be a possible aid to other gastroparesis patients. A large percentage of her experimental trial runs and others around the country have been successful. Acupuncture is another possibility for easing the effects of gastroparesis. This form of ancient Chinese medicine involves the insertion of fine needles into specific sites on the body. Scientific studies have found the practice to be beneficial for controlling nausea and alleviating pain. "Hey, I don't care, I'll try anything," Robin says with a giggle, after hearing about the option while attending one of Fitzwilliams' gastroparesis support group sessions. "It can't be worse than some of the other tests I have taken." Since that February night she thought was her last, Robin again has allowed herself to dream of a future. "Before I got sick, I was ready to get my AA (in May 1998) and just quit school altogether. I wanted to go back to Orlando, get my own place and become a pre-school teacher," Robin says. "Now, I want to make something more of myself, and to do that I have to finish college. "It has changed my perspective completely. Life is going to pass you by, sick or not and you have to jump on it." Despite looming uncertainties, Robin went back to school last summer and continued through the fall semester, making a 3.5 grade point average. She currently is enrolled as a full time student and aims for a degree in speech pathology. "It is not easy because I have to allow enough time every day before classes start to eat, get sick and recover," Robin says. "But it's worth it." She believes the day will come when she can be well again; it is only a matter of time. Her upbeat attitude has helped the family adjust and keeps them all from losing hope. She does not expect a miracle cure. She just wants to be able to enjoy the simple things in life that people take for granted -- such as food.
"If I have to deal with this for the rest of my life, I can. I know how to deal with it. I just have to find friends that understand. At least I have my family." |
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"My ultimate goal is to be able to go out to dinner and movie without having to come straight back home," says Robin. "I'm not saying that I have to eat three meals a day, seven days a week, but two or three days out of the week would be nice."