Diagnosis: Gastroparesis

I was diagnosed with two forms of Dysautonomia this summer, Gastroparesis and Postural Orthostatic Tachycardia Syndrome (PoTS).  While I was very lucky to receive both diagnoses as quickly as I did, there are so many people who wait years for answers or who go misdiagnosed.

In a nutshell, Dysautonomia is an umbrella term that covers a variety of malfunctions of the autonomic nervous system (all the functions of your body that you don't consciously control).  These functions include breathing, heart rate, body temperature, digestion, and a whole host of other body functions that a person without dysautonomia doesn't have to consciously think about.  Symptoms vary in intensity and from person to person, but every single person with Dysautonomia is affected in a multitude of ways.  

The first form of Dysautonomia that I was diagnosed with is Gastroparesis (GP), paralysis of the stomach that causes food to either not digest properly or to take days or weeks to digest. Symptoms of GP include (but are not limited to) nausea, early satiety (feeling full after only a few bites of food), bloating, acid reflux, and abdominal pain. This is considered a rare disease and it's pure luck that I was diagnosed as quickly and as easily as I was.  

 

My family went on vacation in July like we always do.  I noticed that I wasn't very hungry all week (insanely unusual for me) and had had bouts of stomach discomfort in the weeks leading up to our vacation.   I ate a slice of pizza for dinner one night and ended up with a stomach ache later on, but I chalked it up to gastritis, which had shown up on an endoscopy I'd had a few weeks prior.  I still didn't have much of an appetite throughout the week and had mild stomach discomfort more often than not. 

 The day we got home from vacation, we had Chic-fil-A for dinner.  I wasn't very hungry, so only had a few bites of my sandwich and some fries.  A few hours later, I was in debilitating pain.  My stomach felt like it was twisting itself inside out and I had a deep, gnawing pain in the center of my belly, just below the breastbone.  I drove myself to the ER where they did bloodwork, gave me a "GI cocktail" and sent me on my way.  My stomach didn't feel right that whole day, but the worst of the pain was gone.  Fast forward to dinner that night.  Again, I wasn't hungry and wasn't feeling great, so I had {literally} 3 bites of roast beef and 1 cooked carrot before I started feeling nauseous and stopped.  That was all I'd eaten the entire day.  Four hours later I was in the ER again, this time with my mom for company.  I couldn't stand up straight because of the pain and nothing I did made it any better.  They gave me Dilaudid and Zofran for pain and nausea, did more bloodwork, and sent me for both a CT and an ultrasound of my abdomen.  Two hours later, the ER doc came in to let me know that my bloodwork, the CT, and the ultrasound all looked great.  "The only thing we saw on your ultrasound," the doctor said, "was a moderate amount of food in your stomach." I commented that it was strange that there was any food in my stomach, let alone a "moderate amount", because in the last 26 hours I had only eaten 3 bites of roast beef and a carrot, and that had been about 13 hours earlier.  The doctor kind of shrugged it off and told me to mention it to my GI doctor and ask if she wanted to do a stomach emptying test. Had that doctor not mentioned only seeing food in my stomach and had I not said anything about it being odd, I'd still be wondering what the hell was wrong with me.  As luck would have it, that quick comment would lead the a definitive diagnosis. 

I had an appointment two weeks later with my GI doctor.  At this point, I had very little appetite and was in pain every day, to the point where I was on a strictly liquid diet because it was the only thing that didn't send me to the ER. I'd lost 15lbs in 18 days. In the days leading up to my GI appointment, I was desperate for answers and relief and didn't think any of the ER doctors really took me seriously (one doctor, after my 3rd ER visit in 3 days, thought I was there for drugs but that's a story for another time). I sat at my kitchen table and I wrote down every single symptom I'd ever had in my life {seriously, every single one}.  I pored over every test in my patient portal and wrote down anything that looked suspicious or out of the norm.  I went to that GI appointment with 6 pages worth of symptoms, test results, and concerns, and I just dropped it all on her like a bomb.  

My doctor's first thought was to do a gallbladder function test to see if I was having silent gall bladder attacks. I was on board, but mentioned the interaction in the ER and that that doctor told me to mention it and see about an emptying study.  She switched up her original plan and scheduled me for a gastric emptying study the following week.  As I was leaving her office, she looked down at the pages I'd given her and offhandedly said "A lot of the symptoms you have here sound like PoTS.  You might want to follow up with your cardiologist to rule that out."

A week later I showed up for my gastric emptying study, ate the radioactive eggs and toast they gave me, and went on my merry way.  Two days later I got a call from my GI office confirming moderate Gastroparesis.  She started me on medication right away and gave me handouts on how to manage the condition.  There is no cure for Gastroparesis, but diet modification and eating smaller, more frequent meals along with the medication have helped my symptoms so much.  I still don't know what foods will trigger any symptoms, but I stick to my list of safe foods that I know my stomach can handle (hello, carbs!) and my GP has been pretty well managed for now.

Here's hoping it stays that way!