Laxative Cocktails and Ice Cube Dinners: The Adventures of “Backpack Boy”
Writer’s Comment: When I decided to write about a disease that affects someone close to me, I wanted to keep things professional and to focus on the scientific and the medically relevant. During the writing process, however, I realized how difficult this was. A medical chart, scrawled with acronyms and numbers, details the clinical aspects of a condition but fails to illustrate the personal impact on a patient. A week of eating nothing but ice translates to “NPO.” A missed high school graduation party is reduced to “6:30 p.m. out-patient checked in.” All the fear and worry that comes with being labeled with a chronic condition that lasts a lifetime is summarized with “Diagnosis: Crohn’s disease.” In writing this paper, I was reminded of something crucial that I will take to heart throughout my medical studies: the science of a disease is inexorably attached to the emotional ramifications it creates for a patient, and as doctors we must learn to treat both. I would like to thank Dr. Karma Waltonen for her guidance during the writing process, and “David” for allowing me to share his inspirational story.
Instructor’s Comment: I still remember the first essay I read by Chloe Thorn almost three years ago. She was a student in my Style in the Essay class and when I saw her sense of style, I wondered if there was anything at all that I could teach her. Her work in that class was extraordinary, and so I felt blessed when Chloe reappeared in 104F (Writing in the Health Professions). When she proposed writing about Crohn’s Disease for her Interview/Case Study assignment, I knew I was going to be reading a moving piece about a fascinating condition. The assignment was to use an interview to illustrate a medical quandary or illness. Chloe’s piece excels and illustrates both one man’s life and a fascinating disease, while exemplifying the art of good writing.
—Karma Waltonen, University Writing Program
When I walked into David’s room at Good Samaritan Hospital in San Jose, he was sitting upright in bed, dressed in jeans and a blue UC Davis T-shirt. He didn’t look ill, but three small bags hung above his head, and an IV line snaked its way across his bed and into his left arm. A laptop perched on the tiny foldout table in front of him, and he was staring at the screen, engrossed in a movie until he heard my knock.
“I might as well have gold pumped into my veins,” David smiled as he gestured to the bags above his head, “It would cost about the same.” Those expensive tiny bags, he confessed, were his lifesavers. The clear fluid inside is called Remicade—a mixture of mouse and human proteins engineered to fight the symptoms of Crohn’s disease.
David had been midway through a successful high school wrestling season when severe abdominal pain forced him to quit. His symptoms worsened over the course of a few months, until he was making frequent trips to the bathroom—up to fifteen times a day—with bloody diarrhea. One evening, he came home from school nauseated and dehydrated, and almost passed out on the floor. His mother hurried him into the car, and he was immediately admitted to Good Samaritan Hospital.
Patients with Crohn’s disease have faulty immune systems. Their inflammation response malfunctions and their own intestines become targets. Crohn’s disease causes severe inflammation and ulceration of the intestines, which creates scar tissue in the tract. These irregularities affect the passage of digesta through the intestines and lead to bleeding and excruciatingly painful stomach cramps. The damaged intestines cannot absorb fluids properly, which inhibits reuptake of water and causes diarrhea. Patients with Crohn’s disease can quickly become dehydrated due to their diarrhea and anemic due to their bleeding.
David was diagnosed with Crohn’s disease at age sixteen, but his condition worsened dramatically during his senior year of high school. His diagnosis came after the results of two colonoscopies. The night before each procedure, David was given a laxative drink to clear out his intestines and give the cameras a clear view of the surfaces. “It was basically like drinking salt water,” David told me. He remembers standing in the kitchen with his laxative cocktail the night before his second colonoscopy, eyes watering, trying to force the thick liquid down his throat. David vomited the drink and the procedure had to be done without any laxative.
Doctors use colonoscopies to examine the large intestine and terminal ileum, making note of inflammation, swelling, bleeding, or ulceration. As per standard procedure for pediatric patients, David was put under general anesthesia for both his colonoscopies. Doctors inserted a fiber optic camera into David’s rectum and snaked it through the lumen of his intestines. The camera had a light attached, and two small holes on either side. One hole was for water, air, and suction, and the other was an insertion point for a biopsy needle. When particles blocked the camera’s view, the water and suction were used to remove the impediment. Doctors used the biopsy outlet to take a sample of David’s intestines, and the camera to document images of the intestinal surfaces. David’s swollen, irritated gastrointestinal tract indicated Crohn’s disease.
For David, his diagnosis could not have come at a worse time. “I had pictured senior year as a fun time to relax before taking on the responsibility of college,” he said, shifting in his bed. “I feel like I lost that pretty significant chapter of my life.”
David was hospitalized for just over three weeks. His doctors prescribed him the steroid Prednisone to depress his overactive immune system, which lessened his symptoms. But David had to make drastic changes in his diet to allow his intestines time to heal and respond to the drugs. “My first week in the hospital I was NPO (in Latin: nil per os), meaning I couldn’t eat or drink anything,” David told me. He was given all his meals in one cloudy, white bag of lipids and one yellowish bag of nutrients that were administered intravenously throughout the day. “I was so jealous of other people eating, but I wanted everyone to eat in front of me so I didn’t feel isolated,” David explained. His brothers brought in stickers with pictures of hotdogs, hamburgers, and fettuccini alfredo, which they attached to his IV bags so he could “share” meals with them. David told me, “You have no idea how many TV commercials are about food until you can’t eat.”
After a week without food, David was allowed clear fluids in addition to his IV nutrition. Otter Pops and sodas were a vast improvement over his NPO diet, but David never felt satisfied. He found himself chewing ice cubes just to feel like he was eating something. “I was never starving but always hungry,” he recalled. One week later, David was finally allowed to eat what his doctors called “full liquids,” including cream of wheat, and chicken or beef broth.
Another week later, David’s condition was finally stabilizing and the drugs were working well. He was still experiencing some pain and bloody diarrhea, but his doctors deemed him healthy enough to continue treatment from his home. Three weeks after being admitted, David was discharged from the hospital with a black backpack full of IV nutrition bags to carry with him. He kept his IV line hidden under his clothes during the day, but in the evenings, he hooked himself up to his bags for twelve hours of nutrition infusion. “Someone started calling me ‘backpack boy’,” he smiled. “It kind of became my superhero name.”
David’s improvement was short-lived, though; within several weeks, he realized his steroids were no longer effective. The side effects were frustrating. He developed a puffy face and a voracious appetite. His stomach pains and bloody diarrhea intensified. After just three weeks of freedom, David had to be re-admitted to Good Samaritan Hospital.
His hospitalization coincided with his high school’s graduation day. David and his family fought his doctors for a temporary discharge so that David could receive his diploma with the rest of his class. Worried about his health, doctors only allowed him four hours—enough time to attend graduation, but not the all-night party that followed. David attended the ceremony as “backpack boy” in disguise, a hospital bracelet tucked under his sleeve and IV bags hidden under his graduation robes. Missing graduation night was “tragic,” David said with a sad smile. It was the worst night he spent in the hospital, knowing all the friends, teammates, and classmates he might not see again for years were celebrating together while he sat in his hospital bed.
It was during this second hospital stay that David’s doctors recommended Remicade, which works by blocking tumor necrosis factors (TNFs). TNFs are immunoglobulins—proteins in the blood that flag cells for destruction. Remicade binds to those factors to decrease inflammation and ulcer formation. Remicade was one of the last options, as it involved returning to the hospital for five-hour infusions every eight weeks for an indefinite period, perhaps for life. They had discussed options ranging from waiting to see how his symptoms progressed, to performing invasive surgery to remove parts of his bowel. This surgery involved removing his colon, then attaching the remaining large intestines to an external plastic bag. Even with this drastic procedure, there was a 60 percent chance his symptoms would return in two years. David wanted to avoid surgery at all costs, so doctors decided Remicade was their best option.
“It’s probably partly psychological,” David admitted, “but I felt better within a day of my first Remicade infusion.” Within several days, there was no more blood in his stool. A week later, the diarrhea was gone. Some months later, the frequent bathroom trips finally subsided.
David grinned as a familiar medical assistant entered the room, dressed in a long white lab coat. “Ah, the vampires are back again,” he joked. “You know, I was using that,” he said, as the technician quickly drew up several vials of his blood. David often brushed off his condition with jokes, but did take a moment to discuss the impact it had on his life. “I think the biggest change for me was a loss of childhood invincibility,” he confessed. “You never realize how fragile your body is until it breaks down.”
Another thing David has gained from his hospitalization is a greater appreciation for his friends and family. “I never went a day without friends,” David recalled. His mother was always by his side at the hospital, spending some nights wrapped in a blanket on a chair. Every day, at least one friend stopped by to visit him. David is grateful that his friends and family “just dropped everything” for him.
Although David has made a recovery, there is still the fear that one day Remicade will fail him. “My immune system might develop antibodies to the drug, so there’s a chance this medicine stops working,” David worried. “But there is constantly new research coming out and new forms of the drug becoming available, so I will always have a back-up plan.”
David is in remission from Crohn’s disease. He is playing competitive sports at UC Davis and pursuing a medical education. David hasn’t been “backpack boy” for over three years.