|I’ve had gastroparesis since 2010. It’s changed my life dramatically. Surgery to remove my gallbladder because my stomach wouldn’t move food. It just sat there. Tons of nausea, weight loss, abdominal pain…daily. I had to change how I eat food to more liquids, smaller meals, which wouldn’t have been as big of a deal by itself but because of comorbidities is highly challenging to nigh impossible. My diet is already limited due to Crohn’s disease and lack of a colon. The only FDA approved medication that worked for me was Reglan and that has a black box warning for tardive dyskinesia, which is unstoppable shaking for the rest of your life. I took reglan for 7 years due to no other options. If I didn’t take it I’d be so nauseated I couldn’t eat and my stomach would take days to empty one meal. My doctors didn’t think reglan worth the risk. I now take a medication from the UK called domperidone that I have to order online because it’s not FDA approved. It works better than nothing. In a country where there are multiple drugs for the same health concern, why is it that there is nothing in America I can take. Why were there only 2-3 options and none worth the risk due to potential and actual side effects? I implore you to push forward with research. Many people suffer idiopathic gastroparesis. It’s not our fault that we have it and there is no cure. Once the vagus nerve stops communicating that’s it. EDS, Lyme Disease, GI disorders have correlation with gastroparesis. As I learned in graduate school, correlation does not equal causation. Please find a cause. Please find a cure.
Submitted by: Dr. Sarah Cooper
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.
Hello, My name is Flora, I’m 55 years old & was diagnosed almost three years ago with GP. I was an LPN & it was never taught in nursing school.
When I was diagnosed, I thought they were wrong & was in denial for over a year. But finally doing some research & joining the FB page for Gastroparesis, I had to face it that this is my life now. I dropped down to 100 lbs, & threw up constantly with bloating, pain, & constipation. No matter what I ate, drank or crushed up, it wouldn’t go away. I believe that I had gotten GP from several abdominal surgeries. After
having a total hysterectomy at the age of 21. I thought that was it, no more problems. But soon afterwards I started getting sick like morning sickness or the flu.
Then in 1994 I had a bi lateral mastectomy with reconstruction. Then I had my gallbladder taken out because it elongated because there was no
female organs to keep it in place. All the while, I just thought I caught the flu more than the average person. After a while my family said something is wrong, you can’t get the flu every 3 weeks.
I finally found a PCP who said I think you have GP. He sent me for the GES test, & I flunked it. I now know how to watch what I eat, I can’t eat over 4 0z. at a time & usually eat every other day. Once I put my full attention to this disease. I found a Gastro Dr. who treats people with GP. She suggested I try Domperidone 10 mg, 3 x a day. Since I have taken it my weight has gone up to 140lbs, I my flares are shorter & I’m not in the ED.
I also had gotten SIBO. that is when food sits too long in the intestinal track & you get an infection. 2 rounds of different anti’s & it was gone. Not forever, because I went 7 months without it & I think I over did it with the false sense of I’m healed & ate things I shouldn’t have had. So back on the anti’s. This is like round robin. I’m not sure how long I can stay on the Domperidone, but I know without it, I wouldn’t be here today. FDA needs to approve this drug in the States. I will fight for this until my last breath!
I’m fighting everyday to keep living. For me, there is no other option. This is my goal & to spread the word that this a digestive disease, not in my head. I don’t need a psychiatrist, I need for the healthcare profession to admit that this is a disease & they need to find a cure! Treating my symptoms will work for now, but how long will it work? We need a cure!
I’m a fighter & will continue to fight this battle. It may not be everyday, but I will not give up! I am a human being, not just a diagnosis. I want to be treated as a human. If your reading this, I will take it that you too have been diagnosed with GP or you are a Dr. who want’s to help me & my family of GP. Thank God I am a positive person or else I don’t know where I would be. I know one thing for sure, If you are told It’s in your head, or there is nothing they can do for you, then FIGHT! We all must be proactive in our own healthcare now. I know it’s like a full time job doing that, but it’s where I am right now. Thank you for taking the time to read my story, God bless, & let’s find a cure ASAP!