The whole genre of my healthcare had changed when I first woke up, swathed in warm blankets after my emergency surgery to have 2.5 inches of dead bowel removed. It wouldn’t be until almost a week later, after all of the testing was complete, that I would find out I had a disease called gastroparesis. The NG feeding tube formula they had been pumping me up with had congealed inside me forming a hardened mass called a bezoar. This in turn had caused a bowel obstruction. After four days of being ignored while I was supposedly being “treated” for an “eating disorder” in the children’s inpatient psychiatric unit, the obstruction had finally just ruptured causing my surgical emergency and the death of that 2.5 inches of bowel.
At ten years old I weighed 38 pounds. For the last two years, everyone had passed me off as a psych case. At first, my doctors decided that my eating issues were all behavioral. They had me see a therapist. The therapist and my parents designed a sticker chart reward system around eating meals.
I ended up faking eating at school, but they figured that out anyway when I couldn’t stop losing weight. Then they diagnosed me with anorexia nervosa. Two days after I completely stopped drinking anything, I passed out in an elevator. My dad scooped me up, put me in the car, and brought me to the hospital. At the hospital we found out that I was near-dead from malnutrition, my kidneys were beginning to shut down from dehydration, my stomach was barely moving, and I had all these blood tests showing stuff wrong with what they were calling “inflammation levels”.
I spent about a month on the pediatric medical floor. They did more GI blood tests, a CT scan, an MRI, and some X-rays. They never did an endoscopy. It would have alerted them to just how slowly my stomach was contracting due to the gastroparesis. Instead, the doctors decided that my GI tract was fine and that the inflammation labs must have been due to some other underlying disease process that was not something that was immediately life-threatening like my refusal to eat.
They agreed with my parents and my outpatient doctors that I was just a psych case and anorexic. The pediatric medical floor shipped me to a children’s psych unit.
It was after that week and a half in the children’s psych unit that they discovered that I’d perforated my bowels due to a massive bezoar and needed immediate intervention. On my 11th day in the children’s psychiatric unit, the nurses rushed me back to the medical side. A team of doctors were waiting for me in the operating room. As soon as they raced me in they began hooking me up to their monitors and almost immediately knocked me out to begin the emergency surgery.
After my surgery, the hospital stopped bringing me trays of food. There was no more making me sit in front of a whole meal with my stomach rioting, while someone yelled at me to eat. Now no one was forcing me to avoid the bathroom for an hour after my pathetic attempts at eating. This meant I wouldn’t pee all over the plastic chair in the dayroom. I would no longer be that ten-year-old girl sitting in a puddle of her own pee in public. The nurses and counselors wouldn’t chastise me and send me to my room for “acting out and displaying inappropriate behavior (not being able to hold in my pee long enough)”.
Now I was no longer as much of a psychiatric patient in need of tough love. My mom had gone back to sleeping overnight with me in the pull-out chair next to my bed. It was provided for parents or guardians of the patients in the children’s hospital. Suddenly the gastroparesis had turned me back into an “acceptably sick” patient. Although they hadn’t diagnosed the with gastroparesis at that point, they knew something was physically wrong with me. They knew my GI tract was messed up and that I had a real medical issue not a psychiatric issue like an eating disorder.
To my horror, they’d replaced my NG feeding tube with an even bigger NG tube. However they weren’t feeding me through it anymore, thank God! They’d hooked it up to drain out my stomach contents. Luckily for me though, they only kept it in for six days. They just needed to keep my belly empty while I healed. Throughout the rest of my childhood and adolescence, this would happen to me frequently because of the gastroparesis. Now I have a GJ tube. When I get a bowel obstruction now, we just hook my G-tube part up to wall suction for a few days. I don’t need to get an NG tube anymore. What a relief!
I also noticed that I had a different kind of looking IV line in my right arm, it had two different tubes coming out of it instead of one. The nurses and doctors explained to me that it was called a PICC line, and that the end of it was in the big vein that dumped into my heart. They were giving me special antibiotics through it and I would need to be on those special antibiotics that went straight into my heart for the next six weeks at least, to fight off the infection that had been caused when my bowel exploded inside my belly.
The whole time I was there they ran a bunch of tests on me. It made me really nervous. What if the doctors didn’t treat my constant agonizing pain and crippling nausea? Psych patients can’t get sick. They’re too crazy. The medical community seems to think you can either have medical issues or mental health issues, but you can’t have both
The nurses and doctors on the general pediatric medical floor talked and joked with me. They got me warm blankets when I was cold, brought me down to the activity room to play video games, watch movies on a huge tv screen, play board games, and do art projects. I wondered if it was all going to stop after the tests were done. I wondered if they would ship me back to that psychiatric unit at some point, On the psychiatric unit they gave me medications that made me feel crazy and then locked me in an empty room with no toys.
The doctors at the hospital here did some of the tests the other hospital did. They did an X-ray and a CAT scan. Then they had me swallow this awful white goop and they took X-rays. Days later I still couldn’t poop out the barium. I was mortified because they came in and told me that they had to give me an enema. Enemas seemed like they were the stuff of nightmares or historical fiction. I didn’t even know they were real things still used in medical practice. When you’re ten years old and shy, an enema is mortifying.
The nurse at least was female.
“I just need you to slide down your pants and roll over to your left side,” she told me.
I pulled down the cartoon tiger hospital pants and rolled over. She then proceeded to squeeze an entire bottle of liquid up my rear end. I had always thought that was an “exit only hole”. I could have died of embarrassment and discomfort.
Then she told me to hold it in as long as possible, to try for fifteen minutes. That would be ideal, she told me. Well, there I was, lying there in the hospital bed; clogged up with pasty, thick, white, and chalky barium that really had no business being in my body in the first place as far as I was concerned. My pants were around my ankles and the nurse who had just pushed the enema the wrong way down a one-way street was just standing there.
“Hold it in for about fifteen minutes,” she was trying to tell me, as the enema threatened to make a projectile-style exit off the next exit.
Fifteen minutes?
Hmm, how about 15 seconds
I managed to hold it for about four minutes. Then the enema, some poop, and a good amount of barium made an emergency departure from my body rapid-fire into the bedside commode. Any shred of humility I had been holding on to, got flushed down the toilet with the contents of the commode bucket
We still had to find the reason my body was failing me.
Gastroparesis is one of the main causes of bezoars. A bezoar is what caused my bowel obstruction .and what caused my bowel to perforate. Because of this, the hospital GI doctor ordered a gastric emptying scan to check for gastroparesis.
Normally with a gastric emptying study in the USA, a person fasts for about 4 hours and then eats a small meal of eggs or oatmeal with a radioactive tracer, toast, and water. After that, you lie under a camera for four hours. Some doctors order 2-hour gastric emptying studies or even 1-hour ones. Those are helpful indicators but the gold standard test for checking for gastroparesis is the 4-hour gastric emptying scan.
Because we knew I couldn’t tolerate solid food without getting sick (I couldn’t really tolerate liquids either, but the doctors figured that just 5 ounces should be okay), I was going to do the study with Pediasure. If I threw up, the Pediasure then I would have to redo the whole test. During the test, I had to swallow back actual vomit a couple of times. It rose up into my mouth. I tasted the milky, vanilla, yet rubbery flavor of the Pediasure. It was mixing with the sour bitter bile that comes with liquid that has already entered the stomach at least once.
I was trying to focus on the exploits of Harry Potter and Sirius Black in the third Harry Potter book. My dad was reading it aloud to me, but it’s not easy to lie still under a camera when you’re ten years old. Plus, it was making it harder because my stomach couldn’t really handle the Pediasure. The entire time I was under the camera my body was begging me to allow myself to puke it up. Little mouthfuls of vomited-up undigested Pediasure kept coming up in my mouth. I would have to swallow them down again to make sure that the test would be accurate and work.
They had told us that most people’s stomachs empty after about one hour with liquid, but that we would have to stay the whole four hours if my stomach still wasn’t empty. If after four hours I still had Pediasure with the tracer in my stomach that would pretty much guarantee that I had gastroparesis anyway.
After about two and a half hours I started asking if I was empty yet. I sort of knew I wasn’t because I could still feel something sloshing around inside me dangerously. Sure enough, the lab tech’s answer was a consistent ‘no’. My liquid gastric emptying scan lasted the full four hours and I had 70% left in my stomach.
On the endoscopy, they found some of the Pediasure from two days prior still swishing around in my stomach. They also found some more evidence of gastroparesis. My stomach, instead of contracting rapidly to churn and push food through the digestion process, was sluggish and barely moving.
“This gastric emptying study shows that she does have gastroparesis, she has quite severe gastroparesis, but I still want to do an endoscopy to make sure that we are not missing anything from the whole picture,” the GI doctor explained to my mom when he came into my hospital room the day after the gastric emptying study.
This clinched it. I had a definitive diagnosis of gastroparesis.
They had taken me off of the terrible Klonopin and just kept me on the antidepressant, but who wouldn’t be a little depressed going through what I had just gone through? However, now I figured things would get better since we had a diagnosis. I just hadn’t realized that although gastroparesis was a major issue, we had only taken a little sip of a Venti-sized latte.
