My History of Gastric Emptying Studies and Thinking About a GJ Tube
My first gastric emptying study ever, was done at age ten. It was right after having emergency surgery for a bowel obstruction. The bowel obstruction had been caused by a bezoar that had formed because of my gastroparesis. The gastric emptying study had shown that my gastroparesis was as severe as they come. My stomach was close to 100% paralyzed. Back then they inserted my first NJ tube. That was when the idea of a GJ tube was first tossed around.
Over the last fifteen years, I’d had several more gastric emptying studies that had shown pretty much the same results. Some of the scans were a little worse. Other scans showed some improvement, but then a few months later were worse again. That’s normal for gastroparesis patients. Gastric emptying studies will always vary day-to-day based on a million different factors.
A Plethora of Motility Testing
Besides the gastric emptying study, I’d had other motility testing as well. The Upper GI had shown that my esophagus was delayed. It wasn’t expanding and contracting to pump food and liquids through it. Instead, it was moving in a wavy contractile fashion. That type of movement wasn’t very effective at all.
A small bowel follow-through had shown that my small intestines were also paralyzed. The Sitz study demonstrated that I had neurogenic bowels (my large intestine was paralyzed as well).
Parents in Denial
Despite all of the testing, I was constantly treated as though I was just being stubborn. People considered my avoidance of food a behavioral issue. My dad thought I had a conversion disorder.
“Just take frequent little sips of nutrition drinks and you’ll be okay,” my mom kept telling me. As if the solution to my incurable medical condition was drinking slower.
What my mom didn’t understand was that those little sips added up inside me. Eventually they would cause me to projectile vomit up a day’s worth all at once. If I didn’t vomit them up they would sit in my stomach. Inside my stomach they would congeal into the rock hard mass of a bezoar. The bezoars would then cause bowel obstructions. If the bowel obstruction is not treated soon enough they could perforate my bowel. That could kill me.
I Really am Very Sick
Now that I was at Mass General Hospital things were changing. I had been evaluated by the top of the top experts. They had agreed with me that my gastroparesis was a real thing. Now it was clear that I wasn’t a behavioral issue or having psychosomatic symptoms orr anything like that. I felt so relieved. I’d been starting to doubt even myself.
The plan was to place a GJ tube in a surgically created hole in my upper abdomen. The hole would lead to my stomach. Part of the tube would end in my stomach, and then part of it would branch off. After it branched off, it would go all the way down to the middle of my small intestine. This way I could get nutrition through the J port of the GJ tube. At the same time I would be able to vent out bile and air through the G port of the GJ tube. I would hook up a drainage bag to the G port to drain out my belly.
The Night Before GJ Tube Placement
The GJ tube was also a more permanent solution than an NJ tube. GJ tubes didn’t clog as much, or erode your nasal passages, sinuses, or the back of your throat like an NJ.
On the morning of my GJ tube placement, I was humming with nerves. The night before, they had stopped giving me my ice chips. I had nothing to soothe my dry mouth and throat. My mouth was caked with dryness so badly that I could barely speak. My lips were sticking to my teeth.
The nurses had also turned off my continuous NJ feed at midnight.
The Interventional Radiology team was going to be placing the tube using x-ray guidance called fluoroscopy. They told me that I would get conscious sedation to keep me comfortable.
“We will give you IV pain meds when you first wake up in the PACU, but then when you get back to the floor you will be on liquid morphine through your J port of your GJ tube. The morphine will be going directly into your small intestine. This means it will get absorbed fasterand work faster than if you were taking it by mouth.” The nurse in the pre-op area reassured me.
It’s Time: The GJ Tube Placement
Despite everyone’s reassurances, my heart was racing so fast that I felt like I’d had a hummingbird heart transplanted into my chest.
When I got into the procedure room in IR (interventional radiology) it was freezing cold. They transferred me onto a table under a giant x-ray machine. The room had all sorts of monitor screens everywhere I looked. They had multiple tables of surgical instruments and sterile blue drapes.
My teeth were chattering. I was shaking so hard I was vibrating. Part of the shaking was due to the ice-cold room. The other part of it was due to a case of terrible nerves.
The interventional radiologist had me sign another one of those consent forms. The ones that clear them of responsibility if something goes wrong. The forms that absolve them If I get even sicker or die while they are putting the GJ tube in.
Taking a Time Out
Then they hooked me up to all sorts of monitors. After that they had their “Time Out,” where they read off my ID band, my name, date of birth, and medical record number, which they compared with my electronic chart. Once that was done, they announced that they were placing a GJ tube, and they listed my allergies and weight.
Once they finished their Time Out, they lifted my hospital gown and washed me. They used some cold and wet antiseptic cleaning solution. After that they draped me with sterile blue sheets that had sticky parts to tape onto my skin.
Needing Enough Sedation To Take Down an Elephant
The first dose of the Fentanyl (a pain killer) and Versed (a sedative) made me slightly woozy, but I was still wide awake and could hear and feel everything.
“I’m awake, don’t start!” I called out in a panic.
They dosed me with another round of Fentanyl and Versed before the interventional radiologist injected me with a local anesthetic.
I cried out in pain, and another round of Fentanyl and Versed went in through my PICC line.
After that, everything got a little fuzzy. For a few minutes, I could mildly hear everyone moving and talking, but there was no pain. It seemed like minutes had passed, but they woke me up two or three hours later.
Complications in Placing the GJ Tube
“Just don’t move at all,” they told me.
There had apparently been some complications due to what appeared to be anatomical anomalies with my organs. They were going to move me to the CT scan suite before they finished up.
I felt no pain and was really out of it but vaguely remembered going down a hall and then getting lifted onto the CT scan bed.
Waking Up in Agony After the GJ Tube Placement
The next thing I remember after that was waking up in the recovery room feeling like a deer that had been gutted alive. I was in so much pain that I couldn’t move. My whole abdomen ached so badly that I could barely breathe. The pain was so intense that everything else felt foggy and far away. It hurt so much that I couldn’t even cry. A wave of overwhelming nausea was swallowing me whole as well. I didn’t realize that there could be so much pain involved in a simple GJ tube placement.
A nurse was in the room and asked me how I was doing. All I could manage to do was croak out the word “hurts.”
“I’m giving you some IV Dilaudid (a pain medicine) and IV Zofran (an anti-nausea medication),” She told me.
It took about four doses of IV Dilaudid and IV Zofran before I could breathe again without feeling like I was going to die.
Odd Anatomy and a Painful Recovery After GJ Tube Placement
The nurse explained to me that it had been a four-hour-long procedure to put the GJ tube in because I had odd anatomy.
After they got my pain controlled to the best that was achievable, they wheeled me back to my hospital room on the same stretcher.
For two straight weeks, I was taking liquid morphine through the J port of my GJ tube every four hours like clockwork. I was in so much pain all I could manage to do those two weeks was lie flat on my back and not move or talk.
Hyperalgesia Plus GJ Tube Placement Equals Horrific Pain
“You have something called hyperalgesia from your Small Fiber Autonomic Polyneuropathy (also called autonomic SFN for short),” Dr. Thomas, the Complex Care doctor (the Complex Care doctors specialized in complicated patients with rare hard-to-diagnose conditions. They would diagnose us and then whenever we were admitted to the hospital in the future they would be our doctors, no matter what floor we were admitted to, and no matter when we were admitted), explained to me.
“What’s that?” I asked.
“You experience extremely intense amounts of pain due to your nerves misfiring. Hyperalgesia causes you to perceive a procedure, disease, or injury that some people find mildly painful, as excruciatingly painful.
I Can Drink Things Again!
They upped my gabapentin (a nerve pain-relieving medication) dose, and things eased off the third week out of my GJ tube placement (even though things eased off, I remained in incredible amounts of pain for the first 3 months post-op).
With the GJ tube inserted, I was able to drink sips of clear liquids again as long as I kept my G port of the GJ tube hooked up to a drainage bag 24/7. The G port was a pretty cool party trick. I would start drinking blue Gatorade Zero and seconds later would watch blue liquid pour down the drainage tubing and into the drainage bag. I used a 2-liter foley bag hooked up to a Lopez valve hooked up to my G port for a drainage bag and it worked great.
I Can’t Tolerate a Feeding Tube Rate Above 40 ml/Hour
It was also nice not feeling like I was gagging on a tube in the back of my throat all of the time. I loved not having an ugly tube taped to my face. I felt like the GJ tube was a self-esteem booster. The dietitian prescribed me an elemental (nutrients were all broken down and easier to digest) tube feed called Peptamen Prebio that ran into my tube at 40 ml an hour.
They had wanted me to get a higher amount per hour, but 40 was all I could tolerate. Unfortunately for me, that meant that my tube feed had to run for 24 hours, and I never could get a break from it. Some people with GJ tubes can only feed for twelve hours overnight and be free from the pump and bag during the day. I was jealous of them.
Terrorizing the Gift Shop
The next plan was to return to IR to insert a Bard Power Port-a-Cath in my chest instead of the PICC line. I had been in the hospital since the last week in July. Now twelve tumultuous weeks later, it was the end of October. Summer had gone without me, and it was getting too chilly for my fragile body to handle wheeling around outside. My mom would take me in a wheelchair, with an IV pole for the IV fluids and the feeding tube bag, to the gift shop or the chapel, or to explore the hospital and get out of the room and off the floor.
At the end of July and through August, my mom would bounce the wheelchair off doors, walls, and furniture. When we went to the gift shop, the cashiers would dread seeing us coming and would make faces at us because my mom got either the IV pole or the wheelchair itself stuck on all the objects on the displays. We would trail slippers behind the chair, dump stuffed animals all over the floor and crash the deodorant and body wash off the shelves.
By the end of September, she could avoid all obstacles and we had stopped destroying the gift shop. By the time October rolled around, my mom was such a pro at pushing the wheelchair that she could be talking on a cell phone in her left hand, and deftly push me around tight corners with the other hand all the while drinking a latte from the coffee shop!