I used to be perfectly healthy. I had graduated high school, turned 18 years old and moved into my college dorm. About two weeks after I had settled into my dorm and started classes, I became sick. I describe it as my stomach “flipping” almost instantly. I became nauseas suddenly and did not want any food/water. I thought I had gotten a bug, so I laid in bed for two days. On the third day I called my mother and had her take me to Urgent Care. I had one sip of water and no food in that three day period. They gave me fluids immediately and dismissed it as a virus. They just did not know what was wrong. I thought I would get better, but after two weeks of not eating and having almost no liquids, we went to my local Emergency Room. I had lost about 20 lbs unintentionally. I received more fluids since I was extremely dehydrated, but the doctors dismissed it as Dyspepsia and gave me six medications. I was told to follow up with the hospital’s Gastroenterologist. The medications did not help. I was still extremely nauseas and did not want food or water. Eventually, the hospital’s Gastroenterologist fit me in the schedule and I saw a Nurse Practitioner. This would be the start of my insane battle with the medical system. I saw her once and knew that she did not care. Her tones and actions made me feel like she did not believe me. She put me through rounds of testing and medications. They had told me that nothing showed up. A couple of months had gone by and I had lost 65 lbs unintentionally. Eventually, my mother called out this Nurse Practitioner and said that she acted like she did not care. Her response was “It’s not that we don’t care, it’s that we don’t know what is going on. You may have to take your daughter to a psychiatrist since there is nothing physically wrong with her”. Being a young female in the medical world is tough. Doctors want to dismiss your issues as anxiety, stress, or eating disorders.
We left our local hospital since they had pretty much given up on me. That hospital did not care that I had left. They did not even call me or try to refer me to anyone. I left on my own because I knew that if I had stayed that they would have let me die. My mother was a wreck about my illness and upset that no one could figure it out. Her coworker referred us to a doctor in the city who was known for taking on “detective” medical cases like mine. I saw this new doctor very fast and she immediately believed me and made me feel comfortable. She put me through more medical tests because she needed to rule out other factors. She pointed out results from scans and bloodwork that the local hospital hadn’t shown me. My liver enzymes had been elevated for some time and my HIDA scan on my gallbladder was not really good. I got to the point with my weight loss and malnutrition that my heart rate and blood pressure were in a dangerous zone. She looked at me and said “if we don’t do something now, you could die in a month”. My HIDA scan for my gallbladder was done using an Ensure protein drink instead of the usual medication. There had been a shortage in the United States of that medicine at the time. The local hospital swore it did the same as the medication, but my doctor and surgeon in the city disagreed. I made the decision to have my gallbladder removed per my new doctor’s recommendation. Thankfully the surgeon did operate on me seeing that my liver enzymes were elevated and that all other possibilities had been ruled out. I had a laparoscopic cholecystectomy in January 2019.The surgeon told me that my gallbladder looked horrible. The report stated that my gallbladder had Acute on Chronic Cholecystitis.
After my surgery, I was able to drink small amounts of water, sip broth, and eat crackers. I was still suffering with nausea, fullness, and constipation after I ate. My liver enzymes were also still slightly elevated. I went to a new gastroenterologist in the city and went through even more scans and testing. One of those tests was a Gastric Emptying study. They told me that my scan looked fine. After not having much help and findings from that gastro, I took myself to Johns Hopkins. I saw a liver specialist initially since my enzymes had still been off. She looked at my medical history and said “so, you have Gastroparesis?” I said “No, they told me that scan looked fine” and then she said “Well they were incorrect because this scan clearly shows that you have Gastroparesis. You need to see a specialist for this now.” The Gastroparesis specialist at Johns Hopkins confirmed my diagnosis of Gastroparesis in February 2020. He was very good at counseling me through the acceptance and understanding of the illness. My Gastroparesis is Idiopathic, but the speculation is that a virus wiped out my gallbladder and stomach. That is only speculation and cannot be proven, so it is Idiopathic Gastroparesis. I was made aware of the symptom management options that I had. I had tried a couple of the typical pills like Motegrity, but I had major side effects which left me on the couch in severe pain. The best way I have been able to manage my Gastroparesis is with Zofran (anti-nausea) when needed, dietary and lifestyle change. At my first Gastroparesis specialist appointment I received a Gastroparesis diet sheet in my folder. It has honestly been the best thing for me. I follow that diet strictly and it allows me to reduce my nausea and finally be able to eat some solid food again. I also go on nightly walks after dinner to help with motility. Food is my main trigger and stress makes it even worse. I will flare for 4-7 days with constipation, nausea, fatigue, back pain, and lack of appetite. I pretty much stick to bland snacks and liquids when I flare. Heating pads, Zofran, and hot tea are some of my must haves.
It has been a hard mental and physical adjustment. With time, things have gotten better. I have a lot of health anxiety and resentment from my experiences in the medical world. I only shared a small portion of those experiences in this story because there are too many. I also went through/ am going through a tough grieving process. I grieve the person I used to be and the life I had previously envisioned for myself. I am lucky to have an extremely supportive fiancé and family. I do have people that have decided to not be supportive and that is okay. I emotionally disconnect myself from those people. With a lifelong illness like this, you have to surround yourself with people that love you and support you. It’s hard enough to accept and adapt to an entire new lifestyle alone.