My gastroparesis journey began back in 2016 when I suddenly became sick with symptoms of severe acid reflux, bloating, nausea/vomiting and abdominal pain. I saw several doctors who told me I was just under severe stress from caring for my elderly parents and instructed me to take Nexium to help with the pain and acid. As quickly as it began, my symptoms ceased 2 months later and although I had no answers, I was so grateful to no longer be suffering like I had been. Over the next year, I would develop PTSD, depression and anxiety as I tried to figure out with doctors what was wrong with me. My symptoms returned 13 months later and were way more intense this time around.
I went to the emergency room on two occasions spending over 8 hours of testing where I was incorrectly diagnosed with constipation and the other time, gastritis. My GI doctor kept insisting it was nothing more than stress, but after getting a clean endoscopy, she said my symptoms were consistent with Dyspepsia. She gave me magic mouthwash, so I could eat. I still wasn’t feeling better, so I decided to get a second opinion with another GI doctor where I brought paperwork showing Gastroparesis symptoms that were similar to mine. The doctor did not feel this was the correct diagnosis as I wasn’t losing weight, but stated if I still felt sick in 3 months, he would give me an emptying stomach test to see if my stomach was delayed.
At this point, I felt defeated, and I was too sick to work. I put in for a leave of absence while I continued to search for an answer. Luckily, my PCP took this very seriously as she saw how dire my situation had become. She wrote me the emptying study test to be done at my local hospital, but insisted it was probably not Gastroparesis. I was nervous about getting the 4 hour test done as I wanted answers, but also wasn’t ready to live with such a rare disease.
A few days later, my PCP called me at 9:30 in the evening as she knew how long I had been waiting for answers, and confirmed I had a moderate case of Gastoparesis. I was so grateful that she took the time to call me after hours so I could finally put a name to what I had been dealing with for the past year. I was immediately referred to a Gastroparesis specialist 45 minutes away who got me in right away despite being so high in demand. We tried botox which was very successful, however we had to fight with the insurance company to get it covered since they considered it an “experimental” treatment. They covered everything but the actual botox so I ended up paying $1400 out of pocket for the injection.
Nine months later, we tried another injection of botox, but it didn’t work this time. I was starting to decline rapidly and at this point and had lost over 60 lbs. I was referred to a surgeon who did the GPOEM procedure and although the process was overwhelming and scary, it saved my life. During this entire time, I was in therapy to deal with it all. I felt grateful that I was able to get the help that I needed as not everyone can get the same level of care when it comes to Gastroparesis. It seems like so much is misunderstood in the medical community, We need more funding to raise awareness and for better medications which will lead to a cure one day.