I remember the exact day it happened. It was the Friday before Memorial Day 2014. The unbearable pain that began in my upper abdomen caused me to go to the local ER. They told me to call my GI on Tuesday and since my bloodwork looked fine there was nothing they could do. I was discharged. My husband insisted we go to a larger hospital because there was clearly something wrong. We drove an hour with me in ungodly pain. They admitted me for observation. The GI came in the next day and told me to call my GI on Tuesday. I wanted to scream for help!
During the course of the summer I went to the larger ER six times for extreme pain and vomiting. I quickly learned that few doctors know about gastroparesis and furthermore, you’re treated as a drug seeker because of this. There were some wonderful doctors, but they truly didn’t know what to do. I just wanted relief from the pain. I had never experienced anything like this and I’m pretty tough! I found out during this period that I had lost 40 pounds in 10 weeks. I walked/sat around wrapped in a giant fleece because I was always freezing!
I finally saw my GI the week after observation. He ordered an endoscopy. The endoscopy showed slow motility and the doctor put me on Reglan. My only question lying groggily after the procedure “will it stop the pain?” No answer. I realize that pain is not the normal primary symptom for gastroparesis, but it was mine. I anxiously waited for the results because I may have an answer to the pain. Finally, a call from “my” GI after three days. He simply said he couldn’t treat me. He said I may have a disease. He then suggested I go to Jefferson or University of Penn. He gave me the number to Jefferson. Utter shock was my reaction. How could he just dismiss me? I’ll never forget/forgive this. My pain had now started in my upper abdomen and moved to my right rib cage. My parents came up from Florida for 5 weeks at this point. I simply couldn’t function anymore.
I went to Jeff because they had an earlier appointment. Jeff, like Penn is supposed to be an excellent hospital of Philadelphia. My young and inexperienced doctor did send me for a GES. It showed slow motility. He told me I had Gastroparesis in June 2014. I asked several questions. I was frustrated because most of his answers were “I don’t know”. He was nice enough, but I needed answers. He finally sent me for an MRI which showed nothing. I decided to try to go to another hospital for a second opinion with someone who was supposed to be an expert in the field. This was the single most horrible interaction I have ever had with a “physician”. The long and short of it is after a long interview asking about sexual abuse of myself and family, he decided he didn’t want to be involved. I had put all of my faith in this man! I was desperate for help! He said I needed a psychiatrist. He also said he wasn’t the only “drug man” in town. Get my drugs somewhere else. Go back to Jeff! I was heartbroken at this point. I was losing hope.
I had to educate myself. I used G-PACT, the net, books and support groups on the Internet. I learned about diet modification. I barely ate anyway, but I did discover that if I didn’t eat solids after1-2pm, my pain was lessened. I tried remedies for constipation. None worked. I had to get a prescription. I struggle with fatigue. My hair is falling out which is most upsetting! My stomach is distended to 63 inches. That’s embarrassing to admit, but I’m tired of being ashamed.
My disease took a turn in June 2015. My nausea medication stopped working. I was told it was the best, so no other prescriptions! I was nauseous 24/7 and dry heaving/vomiting. It was awful and took everything out of me. One day I ate nothing and had no vomiting so I stopped eating. I didn’t even miss food. After nine days without a morsel of food, my sister who is a nurse in CA insisted that I go to the hospital for fluids. I had sworn off hospitals after the summer of 2014. I had lost 18 pounds in a month and a half. My husband begged me to go. I was not myself and clearly needed help. The doctor knew all about gastroparesis, was kind, and truly helped me by putting me on Reglan short term. I’m happy to report I’m on new medication which on most days keeps the nausea at bay and allows me to eat. I also have a pain management doctor. We struggle, but I’m moving forward even if he thinks pain is not associated with gastroparesis. He’ll come around because I am so tired of hearing that!
I’ve learned so much about the kindness of fellow GP brothers and sisters. I have the privilege of coordinating G-PACT Send A Smile. It gives me purpose. Members do anything to help those in need. I am so proud of this group and its purpose. It has helped me grow as a person and as someone who has this disease. And of course, I wear green every Friday to promote awareness!