I have always been a person who considered my health above average. I rarely got sick even though I had type 2 diabetes. This year right after ending tax season, I started to feel really sick. I wasn’t too worried except for the fact that I couldn’t eat. I started to think it was nothing and ignored it eating when I could. Finally, I wet to the hospital after almost two weeks of puking anything that touched my tongue. I was misdiagnosed and sent on my way with a 2k hospital bill. I started to take the medicine I was advised to take and things were getting worst. Soon, I wasn’t able to handle water. I was losing so much weight my friends were terrified for me. I was going to the ER once a week and then every two to three days. Finally, right before my birthday I was hospitalized when my blood tests came back strange. They ran test after test and came to the conclusion that motility was the problem. At 32, I was diagnosed with gastroparesis. I spent my birthday in the hospital before finally being released. I would later have a 50k hospital bill from that alone. I would go days with feeling better before the cycle of going to the ER would return and then I’d end up being kept again and almost placed in CCU due to the throwing up and my blood tests coming back abnormal. There needs to be a cure. This disease has made my life so much harder. I can’t work a full time job. I can’t ever be normal again and eat the things I love like salad and broccoli. It would be nice to one day enjoy those things again.
I have been fighting Gastroparesis for over 12 years. You wake up hoping you will have a good day be able to eat . Hoping I have energy. I try to eat then I have major blood sugar problem being 35! And trying not to throw up . Or hoping I will stop going to the bathroom 10 to 15 times . This is everyday
I can not work because there is no way
I can just lay down everyday and hope I don’t throw up or pass out from too low of blood sugar and can’t stay out of the bathroom when I should be working
Gastroparesis has been being nice to me the last week. Nausea is like always … 24/7. However it’s been mild. I’m holding around 120 lbs right now. I say all this because just a handful of years ago it was really kicking my rear. In December of 2012 I went from 135 lbs which was hard fought to gain back to after my original lose during diagnosis back in 2010. Anyway in a two week span I went from 135 to 82 lbs. My gi was recommending tubes to feed me and one to drain my stomach. I refused as I’m stubborn and didn’t want an operation (this was prior to having my gallbladder removed for my first surgery) and wanted to try to avoid one.
I fought hard daily to control my violent vomiting sessions. My severe nausea and pain we’re horrible. By 2016 I had managed to get up to 120 lbs finally. Then I had my gallbladder removed. My gp got pretty bad again till almost 2017 when I started a approximately year long remission. During which I went up to 178 lbs. In June of 2018 I started losing again and by December I had dropped back to 110 lbs. During that six months I did my best to care for the love of my life as she was losing her battle with metastatic breast cancer that had metastasized and spread through her body. After she passed I slipped into a bit of a depression and let my health go south. Due to my vomiting and non-existent appetite my potassium dropped to a 1.2. For those that don’t know potassium levels should be between 3.5 and 5 to be within normal range. I had no energy and barely left my bed. I ignored my chest pain, low BP, and the numbness in my limbs. I didn’t really care. My primary doctor and the love of many people I care about both known in person and known only from Facebook gave me a reason to get out of bed and get to the hospital and get my health going the other way.
Now here we are in August 2019. I’m alive and fighting the good fight on the bad days and doing as much as I can on good days. Everyday unless I’m to I’ll to be online I’m here in the gastroparesis support groups doing my best to support and love others that are fighting. There are many of us out there. We look like your brothers and sisters. Your sons and daughters, cousins, mothers, best friends, wife’s, and others. Some of us gain while others lose. Some like me experience rapid and drastic fluctuations. With periods of stasis where we can’t gain but also don’t lose.
We have lost many warriors to complications of this and or comorbid diseases. We’ve lost children as young as 3 and older adults. Our lost gp brothers and sisters vary in size, shape, color, age, and more. We remember them and mourn their loss.
Please if you read this and care for me at all do me the favor of sharing my story and other gatroparesis posts. Spread awareness and advocate for awareness by doing so.
If you have questions message me and I’ll do my best to answer them for you and help you understand. We are starving for a cure. We need help spreading awareness.
Hi my name is Rebecca Lucey and I started having stomach problems when I was 8 years old. I started at pediatric GI doctors and they said that they didn’t know what was wrong with me and that I was just overweight and constipated. They did every test you could think of: upper GI, colonoscopy, HIDA scan, X-ray, cat scan, and finally someone thought to do a gastric emptying scan. Which showed I had gastroparesis.
So I was officially diagnosed in 2012. My doctor put me on Erythromycin for three times a day for three years. Then in 2017 once I saw a regular GI specialist, he put me on Domperidone which didn’t seem to be working and then he just said I was constipated and needed to go make myself throw up. Needless to say I never went back to him. Then I found a new GI doctor who only cared about IBS and that’s the only thing you had wrong with you was IBS (which I don’t have).
A new doctor I found in January 2019 was who was supposed to be very good (if you didn’t have gastroparesis) and I was at the point where I was not able to hold down any food or liquids at that point and was very dehydrated. He thought I was having mental problems. Then I started throwing up blood and they found nothing wrong with me but admitted me to the hospital. The doctor did a gastric emptying scan and still said I had mental problems even when the scan showed that my stomach did not empty. Once I got discharged I found one last doctor and gave him my file, told him my problems and he said I needed a G-POEM surgery.
The surgery helped a lot. Although at the hospital they had me eat a meal the very next day after the surgery and that made me stomach hurt so bad. I was discharged and then two days later I was admitted again for pain and dehydration. All in all the G-POEM helped me very much and I am very thankful for the current GI doctor I have and my mom for putting up with everything.
I had just graduated Nursing school 7/2004, took my exam, interviewed, was hired and started my LPN career with exactly the place and shift I wanted all by 9/7/2004. Things were going along smoothly. Then, Thanksgiving Day 2004, Harvey made his debut.
Vomiting and severe nausea. After 2 weeks of this I went to see my PCP. The testing began. All scans and tests came back ok. Then, he ordered the Gastric Emptying Study. After 3 hours, I was in such severe pain that the doctor ordered it stopped. Nothing had moved. I was started on Reglan. Not a good med.