It’s Not in my Head, It’s Still in my Stomach

The story of Meghan

Hi my name is Meghan, I live in Staten Island, New York, and work as a dermatological Medical Assistant and I have a rare disease called Gastroparesis, also known as delayed gastric emptying . It is a motility disorder that slows or stops the movement of food from the stomach to the small intestines. Symptoms that patients and I often experience are nausea, vomiting, heartburn, early satiety, erratic blood sugars (whether you’re a diabetic or not), malnutrition and weight loss. As you can see, a lot of these symptoms are common GI manifestations in many GI diseases. This gives patients seeking help an immediate disadvantage as physicians are more readily to misdiagnose and treat this disorder improperly. And if the disorder isn’t addressed in a timely and correct manner, there are certain repercussions that could be detrimental. Gastroparesis is common among diabetics, as I am one myself and have had 6 hospital admissions in the past 6 years due to Diabetic Ketoacidosis, dehydration, and malnutrition . DKA is considered a medical emergency when a diabetic can’t produce insulin on their own resulting in a production of ketones (burning fat instead of the sugar). This leaves the patients with a rapid heart rate, dehydration, trouble breathing, electrolyte depletion, nausea and vomiting.
I was diagnosed with Gastroparesis 6 years ago. However, through this crazy journey I’ve found that I’ve had multiple instances where I was medically gaslit and dismissed by numerous doctors. I’ve found that a lot of these doctors seem to flag your chart if they see you suffer from a mental illness. As a young woman who suffers from Bipolar Depression and anxiety, I usually find myself fighting for my health in a lot of ways.
Upon my first hospital admission, we had yet to find the cause for my nausea, vomiting and stomach pain. However, after the ER physicians did a detailed work up and saw I was in DKA, they decided to admit me for treatment and further testing. At first, I saw this as a great thing as I really believed the providers in charge would do everything in their power to ensure the problem would be resolved. However, I was sadly mistaken. I was admitted to the hospital for 4 days and in those 4 days I was treated as if I was the lunatic. Hospital staff even went as far as labeling my mother with Munchausen by Proxy and my stepfather a pedophile. Being 17 at the time, the therapists tried to go behind my mother,s back to discuss these sort of things. Hospital staff truly believed it was all psychological. But did they really believe that? Or did they just not have a plausible answer as to why I was having violent vomiting episodes that lead me to have near diabetic coma experiences. At this time we had run every single possible GI test we could run except the gastric emptying scan. The gastric emptying scan is the gold star test when it comes to diagnosing this motility disorder. However, the hospital insisted that I did not need the test as they believed I was too young to have this disorder. For 2 days my mother fought every provider, PA, nurse, receptionist to ensure I took that test. They had security called on her when she refused to leave the nurses the station and made a scene. And I thank god everyday she did because not even three hours after concluding the test, I was diagnosed with Gastroparesis. And let me tell, you hospital staff could not wait to get me out of there. Three hours after being told I had a debilitating life threatening condition, the attending provider saw it fit to discharge me with two medications and a three page paper on Gastroparesis and its dietary restrictions. Little did I know that would just be the start of my fight for quality healthcare.
My last hospitalization was by far the worst experience I had. At the beginning of this year my health took a turn for the worse. Vomiting and nausea all became too frequent leading to another DKA episode. I was admitted into a NYC hospital for treatment by my GI. Upon arrival, they had told me their labs were not working so they wouldn’t be able assess and treat me for DKA correctly until they were fixed. They did not give me the option to go to another hospital, I was told I had to stay there. 1 hour goes by, 3 hours go by and I still didn’t even have an IV in me for just basic fluids. At this point, I was vomiting uncontrollably and sounded like the exorcist, my breathing was shallow as I felt like I was breathing through a straw. I repeatedly asked for help but was told by the nurses and the provider that I had difficulty breathing because I was anxious. I decided to take matters into my own hands and I removed my IV they had finally placed in me, and tried to leave. Security was called and I was ordered a psych consult and placed on a 1 to 1 AND I still was not being treated for the DKA. 9 hours later after being completely neglected, I was met with the ICU doctors waiting outside the X-ray room. I was told my CO2 level, DKA’s major indicator, was at a critical range of a 7.9, and had to be admitted to the unit immediately. The 1 to 1 immediately disappeared and the psych consult was no more.
With these two major experiences I had in healthcare as well as working in it, it amazes me how in 2022 we still can’t properly diagnose and treat physical and mental diseases. I have seen over 50 physicians in my life due to my chronic illnesses and I can always tell a good physician from a bad one when they can openly admit they don’t have an answer to your problem as opposed to sticking a label on you to better their ego. I would not be where I am today without my family, friends and especially my mother. She has been my biggest advocate since I was diagnosed six years ago. Without her, I would have never have gotten diagnosed as fast I did and would have never received such top of the line treatment. But we shouldn’t need such advocacy when we are sick. We should be able to walk into a clinic or hospital and receive the upmost care instead of leaving with more psych issues than they had originally labeled you with.