The Shocking Adventure of My Gastric Tube Removal: PEG Bored
PEG stands for Percutaneous Endoscopic Gastrostomy. It is a tube that enters the stomach through your abdomen. It was kinda like an artificial umbilical chord and I was bored with it. It’s like a catheter only in the sense that there is a hard plastic balloon inside my body, only this one was in my stomach. And it’s used to put things in, not take them out.
I was scheduled to see Tamar Kotz, the awesome speech and swallow doctor, again on September 15, 2011. After seeing her right before she left for vacation in August, I had scheduled an appointment to have a barium swallow test with her when she returned. Barium is a white liquid that tastes kinda tangy and synthetic… It’s gross. It allows doctors to view the food being swallowed (bolus) by X-ray so it can be followed from the mouth to the stomach. I was given several different consistency foods with barium (barium sulfate to be specific).
I had taken and failed this test a few times before. Previously, when I swallowed water with some liquid barium mixed in, the liquid would pool at the base of my tongue (which is in the throat) and some would later be inhaled into my lungs… And I wouldn’t cough. The same thing happened with purees (apple sauce) and solids (graham cracker soaked with barium sulfate.) this meant that not only was I aspirating, but I also didn’t react to the fact that I was aspirating. This is called silent aspiration.
This time, when being tested, I passed. I would swallow the food (solid, liquid, or pureed) and it would all make it to my stomach without any going into my lungs. VICTORY!!!!
When I was in the hospital, I was starving, not to mention the psychological effects of not swallowing for a long time. When your hungry and you haven’t eaten anything conventionally in months, primal instincts override rationality. If someone came to me with an amazing meal cooked by some amazing chef and told me that I could eat all I wanted and would be able to eat for the rest of my life, but I’ll never be able to walk again, or I could wait and I’d have a chance to recover from both ailments that prevented these activities… I would have immediately chosen the food and loved every minute of it. I totally would have made a deal with the devil… I was brought to the point where I would have made it for a Kit Kat bar.
After I passed the swallow test, my mom asked Tamar what I was to be restricted to, and Tamar said “no restrictions. Don’t start with with sunflower seeds or popcorn of something that people tend to choke on, but he can have whatever he wants at this point.”
There had been so much hype built up for my first meal, but when my mother and I walked out of Tamar’s office, I said “There’s a restaurant. That’s what I want.” It was a seafood restaurant and I had stuffed sole filet packed with crabmeat stuffing. It was delicious to me. Just about anything would have been. The restaurant closed the next month, but I was so happy that there was a restaurant there, but I didn’t care what it was. IT WAS FOOD!
Dr. Greenwald, my physiatrist (coordinator of all rehab care) while I was at Mount Sinai, had scheduled a gastroenterology (swallow, digestion, and elimination of food) appointment for me when I was discharged in July. Coincidentally and serendipitously, that appointment was scheduled for the same day!
After eating, my mother and I went to this appointment. When we walked into the office, the gastroenterologist was a petite girl who said something similar to what Tamar said “I’m not sure why you’re here.” My mom explained that I had just passed my barium swallow test and was cleared to swallow, so I no longer needed a PEG tube. The doctor checked my file, which did not reflect this yet. My mom made a call to Tamar’s office while we were still there and explained the situation to Tamar’s very helpful assistant, Kelly, who was aware that I had passed and entered it into the computer system right there.
The gastroenterologist saw it now, so she had the go ahead to remove the PEG tube. My mother and I thought that this would involve a surgery of some sort because a PEG tube is held in by a hard plastic balloon inside the stomach. The doctor said “lay down and pull your shirt up.” I did so with a puzzled look. I was in something like a reclining dentist chair. I asked if I could take a picture, and she waited for me to do so.
I’m not even exaggerating about what happened next:
The doctor grabbed the tube coming out of my stomach, wrapped it around her hand once or twice, put her foot on the reclining chair that I was lying in to brace herself, and said “Don’t move.” My puzzled look turned to fear and then agony as she tugged with all of her might. I began shrieking and I remember catching a glimpse of my mother with her hand covering her mouth, and an “oh my god” look in her eyes.
This agony continued for what felt like minutes, and then “pop”. The hard plastic balloon pulled through. It was so painful and intense! I was amazed and disgusted by what just happened. It was done with no anesthesia and was so crude and unbelievable to me. The hole began gushing blood immediately. She brought a gauze to me and placed it where the tube was and put a few pieces of medical tape over it. I no longer had a tube protruding from my belly. Just a bloody wound that would become my “second belly button.”
I had the worst stomach ache I had ever known for the rest of the day, but I ate like it didn’t hurt a bit. It was so cool that I could eat! Food’s kind of a big deal. We all eat… Well some of us have food poured into their stomach through a tube (hopefully temporarily), but still… We eat socially, we have family dinners, and we take each other on dates to restaurants. You can’t live without it, and you literally are what you eat. You are made up of cells that are created from nutrients from what you ingest. I could finally join the rest of the world and eat again. It was wonderful! The meals I would have would more than make up for the pain that I experienced that day.