Hi everyone! I’m so glad to see a group on Gastroparesis. I’m new to Gastroparesis and to this group, but I thought I’d share my story of how I got diagnosed.
I’ve had an autoimmune disease, Rheumatoid Arthritis for as long as I can remember. Well, since I was 5 years old.
On Christmas Day 2012, I woke up early and started cooking a big, beautiful breakfast for all my friends that were coming over later. Everything was fine, but between all the jitters and excitement, I didn’t eat much. Even after my friends arrived, I just kept filling their plates and avoided my own. Hours went by, brunch and lunch were served and eaten and I still hadn’t eaten anything, but oddly, I felt fine. Better than fine, really. I felt great. I felt better than I had in a month because every day for the last month, I had been throwing up at least once a day.
A lot of people ask me how in the world I threw up every single day for a month and didn’t once go to hospital. It’s actually quite simple for me. I had just started my triple-combination therapy to treat my rheuamtoid arthritis and I just thought it was a side effect of all the meds. Chemotherapy and immunosuppressants can really wreck havoc on your stomach, I knew that from experience.
But that evening, Christmas Day, I ate my first meal of the day, less than a handful of pizza rolls and threw up until I dry heaved. My husband then forced me to go to hospital, where I stayed for the next 7 days.
3 Gastroenterologists came and took me off of all my immunosuppressants, but no matter what they gave me or took away, I could not stop purging. Water, bread, soup, broth. I threw up blood, I threw up till I cried from a sore throat. It was awful and they did a battery of tests. Finally, they diagnosed me with gastroenteritis, which is just a fancy word for stomach flu, so on New Years, they sent me home.
I actually thought I would be ok, but any time I ate even one string of pasta, my stomach would swell hugely and I’d begin purging again. At this point, I couldn’t even lift myself out of bed, I was so weak, so 5 days after doctors sent me home, I had my husband drive me back to the hospital where I hoarsely yelled for them to figure out what was wrong with me.
They kept me in the hospital for another 4 days before they thought to give me a gastric emptying scan.
Then, after eat radioactive toast and radioactive eggs and them forcing me to keep it down, I was diagnosed with Idiopathic Gastroparesis -a disease I’d never heard of- and told that my favorite salads, veggies, and fiber, were all a thing of the past. I was in the hospital another 4 days before the news of my diagnosis actually hit me and I cried. My husband and my parents grew terrified when the doctor emotionlessly explained what Gastroparesis was and what would could or “would” be my future.
And so here I am, 4 years later, surviving off half-eaten slices of toast and craving asparagus.