My Gastroparesis is Kicking my Butt
By the end of Spring 2014, I was down to 76 pounds at 4’10. My gastroparesis was kicking my butt. I was living off fruit smoothies that I desperately tried to bulk up with extra sugar for added calories, and sips of Gatorade or Pedialyte. Despite my fervent efforts, I was still losing weight.
I’d had my first gastric emptying study and endoscopy fourteen years earlier. The gastroenterology team had told me that I had one of the most severe cases of gastroparesis possible. Repeated testing over the years showed that my disease was worsening and that my entire digestive tract was mostly paralyzed and couldn’t absorb nutrition.
Fourteen Year’s on the Medical Roller Coaster of Gastroparesis
Over fourteen years I had repeated medical testing around the progression of my gastroparesis. I had a Sitz study done, an upper GI, another gastric emptying study, and another endoscopy. They all came back showing that my disease was worsening every few months.
Most of the time I was fed by NJ tube, otherwise, I lived off protein drinks, smoothies, and a couple of tablespoons of noodles or mashed potatoes a day.
Then in April of 2014, the doctors kind of gave up on me. They began to tell me that everything was all in my head. I don’t know why this is, but it happens an awful lot to gastroparesis patients and patients with dysautonomia.
Back To Square One: Before the Gastroparesis Diagnosis
Up until April 2014, I’d had an NJ tube in place to feed me directly into my small intestine via a tube that was inserted through my nose. When it got clogged in the middle of the month, the doctors refused to replace it, claiming that I didn’t need it. They had decided that I had a conversion disorder or an eating disorder.
We had come full circle right back to where we were when I was ten. It was like all the progress had been erased.
Both my parents were constantly on my back trying to get me to eat more. The problem was that it wasn’t only the unbearable pain that stopped me from eating. It was also useless to try to eat. Anything that went in my mouth came spewing back out in the form of vomit minutes later. I was even having trouble taking my meds. This included the anti-anxiety meds my psychiatrist prescribed so I was feeling amped up with racing thoughts and panic all the time.
The Lifesaving Gastroparesis Facebook Support Group
I joined a support group on Facebook for people with gastroparesis and that helped me feel less alone. After my spring semester of Nursing School was over, I was online on the support group frequently. It was the only place where I felt truly understood and they had helpful tips for dealing with this awful disease.
The group members were horrified over how sorely neglected my health care was, but they weren’t surprised. Gastroparesis is a rare and invisible disease. Because of that we often get steamrolled by our health care teams. Even our family and friends tell us things that prove they just don’t get it.
Things People Tell You When You Have an Invisible Illness
- There’s nothing wrong with you
- Stop being so lazy
- You’re just looking for attention
- This is definitely a drama queen moment
These were words I’d heard over and over along with the tens of thousands of people on my gastroparesis website.
“You need to find a new GI doctor,” they finally told me at the beginning of the summer when my weight hit 73 pounds. “You could die.”
Why You Don’t Put a Band-Aid on a Gunshot Wound
I was frequently passing out and getting dehydrated. At least once a week I would need to take a trip down to the ER. They would rehydrate me with IV fluids and give me IV nausea and pain meds. Then they would send me home only to return days later. It was like they kept giving me a band aid to treat internal bleeding.
Meeting my New GI Doctor
In July I made an appointment with a new GI doctor. She watched my weight plummet to 70 pounds.
“We are going to need to do another gastric emptying study,” she told me.
I attempted one but couldn’t hold down the radioactive egg or water long enough to do the scan.
On my third visit with Dr. Trisch (the GI doctor), she had me come into her office. She had me sit down to talk to her.
“From reading your lengthy chart I have concluded that this is due to your gastroparesis. I know this isn’t all in your head,” she reassured me. I felt like Arthur who had just pulled a sword of the stone. Finally, someone believed me again.
“This going in and out of the ER or observation floor is doing nothing for you,” Dr. Trisch told me at my next visit a week later
Finally, Someone Was Taking My Gastroparesis Seriously
At that point, I had just hit 68 pounds. “I think you need to go back to Massachusetts General hospital and get admitted for a full workup. Your body is screaming in protest to the gastroparesis and dysautonomia, yet no one is listening. You can and will die without some sort of intensive medical intervention.”
Dr. Trisch grabbed my mom from the waiting room. She explained to my mom what she had just explained to me. I was going to die if I wasn’t immediately admitted to a hospital that knew what it was doing.
“I think if she could just go back to a good gastroparesis diet she would get better at home.” my mom said.
Dr. Trisch Stood Her Ground
“Her gastroparesis has been steadily getting worse. By looking at her labs I can see that she needs IV potassium and magnesium more than the once-a-month she’s getting now. Also, her heart rate is so high she could cardiac arrest or stroke out, and her blood pressure is so low she could be tripping on it. The local hospitals aren’t appropriately treating her. If she is not immediately brought to Mass General you will lose your only daughter.”
My mom saw the knotted forehead and furrowed mouth on the doctor and thankfully finally comprehended the severity of the situation
Hospital-Bound
The next thing I knew my mom had grabbed my hospital go-bag and we were on our way to Mass General.
My mom warned me that because it’s such a busy hospital we’d probably be in the waiting room a while. When we arrived, I was too dizzy and weak to walk even just through the ER doors, so she had security grab me a wheelchair that I shakily fell into.
I was terrified that I was going to be passed off by them too. My biggest fear was walking in and being accused of being anorexic, a hypochondriac, or a faker.
Arriving At Mass General
“What’s your reason for coming in today?” the nurse at the triage desk asked.
“I’m having a bad flare-up of my gastroparesis, I feel really sick,” I explained.
I had watched the three people in front of me talk to triage and get directed to the waiting room. The waiting room was packed, In my head, I mentally prepared myself for a long night. However, the nurse saw my skeletal body, my shaking, and my inability to focus my eyes. She decided to send me straight into one of the assessment rooms.
In the assessment room, I got my vitals taken. I noticed the nurse squint a little and then cover up her concerned face with a plastic smile.
“This nice man is going to take you to a room in the back,” she told me. So much for my mom’s theory about a long wait. I was glad I didn’t have to wait but scared too.
“My mom is just parking the car!” I told the first nurse in a panic before they began wheeling me down the hall to the critical care area of the emergency room.
“We’ll send her to you when she gets in,” the nurse told me.
The ICU Area of the ER
When I tried to get out of the wheelchair and onto the stretcher in the critical care area, my legs buckled and the nurses had to catch me before I hit the floor. They lifted me onto the stretcher. They had me get changed into a hospital gown, which I needed help with because I was so shaky. Then they hooked me up to the monitors.
Three different nurses were attempting to get blood and thread an IV in my veins when my mom came in.
“She’s a notoriously difficult stick,” my mom told them as she sat down in her usual chair next to the stretcher.
After four nurses failed to get venous access, the doctor came in.
My Gastroparesis Was Shutting My Body Down
“You’re in a fib, probably from electrolytes being off-balance, we really need to get labs and give you an IV for fluids and meds. I’m going to have to try to put in IVs using ultrasound guidance,” the doctor told me.
Suddenly I was acutely aware of my heart thumping and pounding and skipping beats. I did a couple of four-count breaths like I’d learned to do at the Partial Hospitalization Program, and agreed to allow the doctor and the whole team of residents behind him to secure two ultrasound-guided IV lines.
It took over an hour and about three or four of the residents and the attending to get that IV access. They drew so much blood I worried I was going to become anemic if I wasn’t already. Chances were, I probably was anemic. My blood counts were rarely ever normal. It was my chronic state of being.
How Dr. Trisch’s Instructions Saved My Life
“We’re going to give you a bolus of saline to get your blood pressure up as well as some potassium, phosphate, and magnesium to get your critically low levels up. If the electrolytes don’t reverse the atrial fibrillation I will give you some IV medication to help you out. I’m also going to give you an intravenous injection of dextrose because you’re blood sugar is only 52. You are one lucky girl, if you hadn’t come in when you did, you probably wouldn’t be alive.