Hi everyone! I'm so glad to see a group on Gastroparesis. I'm [...]

Posted by theyoungface_ra @hellokittyy91, Feb 10, 2017

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.

Interested in more discussions like this? Go to the Gastroparesis group.

thanks for sharing; arent there any medicines that can “stimulate” the stomach to move food through?

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@falcon

thanks for sharing; arent there any medicines that can “stimulate” the stomach to move food through?

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Hi! There’s only one that’s FDA approved in the United States, it’s called “Reglan”. It worked very well for me for a several months, however I experienced an adverse event so now I am unable to take it.

Canada has a drug too that is not approved by the FDA called Domperidone, however, as I understand it, it’s tough to get because my gastroenterologist suggested a Gastric Pacemaker instead!

P.S. Tardive Dyskinesia is an IRREVERSIBLE adverse event of Reglan. If you experience ANY muscle spasms (especially in the face, mouth, & tounge) discontinue use IMMEDIATELY & call your doctor.

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Hi I am new to this site. Thanks so much for sharing. I tried Reglan and after one dose I had a severe side effect and had to stop. I am now on bethanachol for my Gastroparesis. It is a cousin of Reglan but so far no side effect that I had from Reglan which is good. So far nothing. My doctor also mentioned the drug out of Canada but he didn’t say the strength or dosage. Until I get that information it’s hard to research it. The other thing he has mentioned is injection of Botox into the spinster between the stomach and small intestine. It is experimental so my insurance company will not cover it. I would have to pay for the Botox injection out of pocket which would be about $700. He said that it works 50% of the time. He is pushing for me to try the drug out if Canada first. I am sorry to hear about all you have gone through. I have diabetes plus NASH stage 3 which is basically liver cirrhosis. Due to the liver condition my doctor had to change my diabetes medication and my blood sugar went through the roof and during that time my Gastroparesis started. My sugar is now under control but the damage is done. What are you eating now? Wanting something to chew that crunches is the hardest for me. I am living off protein shakes right now. I meet with a dietician in a few weeks and hopefully she will have some suggestions.

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