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home > diabetes center > diabetes a-z list > gastroparesis article > patient discussions

Patient Discussions: Gastroparesis - Describe Your Experience

Question:Please describe your experience with gastroparesis.

Comment from: AP, 35-44 Female (Patient) Published: December 04

I was diagnosed with gastroparesis two years ago after having a gastric motility scan. My gastroenterologist told me it probably came from a bad stomach virus I had suffered previously. We were hopeful I might overcome the gastroparesis in time, and for a while, I had a very mild case. (I was even was able to get off Prevacid by making changes in my diet.) Unfortunately, stress and another minor stomach bug appear to have erased those gains. I now have constant reflux that is barely controlled by Prevacid (taken twice every day), and I am on Carafate to protect my throat. I'm nearly at the end of the diet and lifestyle changes I can make: I do not smoke, drink, or drink soda. I am a vegetarian, so most of the big triggers were not in my daily routine even before I got gastroparesis. I've moved to small frequent meals and away from anything fried or fatty. The hardest part is the nausea and throat pain, I am finding that having no food in my stomach is as much a nausea trigger as having too much. Some days it's not clear what is triggering things to be worse or better. I do still drink coffee, but only in small amounts and on a full stomach. I cannot tolerate Reglan, and I am afraid to take domperidone. (The arrhythmia side effects scare me.) Coffee or a little bit of chocolate does seem to help get things moving after I eat. I can't take them on an empty stomach though; they make me feel sick if I do that.

Related Reading: gastroparesis | stress | arrhythmia

Comment from: pm808, 35-44 Female (Patient) Published: March 10

I believe I have always had a slow stomach and major pain killers from a back surgery and shoulder surgery one year apart probably contributed to the full onset of gastroparesis about two years ago. I am so bloated all the time and actually gain weight from this despite eating less than I have ever eaten in my life. I find the bloating is worse with larger meals, but it's always there even if it's been hours since I've eaten. I'm on domperidone, but what a pain to have to get it from Canada, and it's not the wonder-drug others describe, for me at least. It just controls symptoms but doesn't seem like a long-term solution to me. What I would give to eat a salad or fresh strawberries again... Can't researchers help us? I realize there are worse conditions but this is life-altering, and the weight gain and not knowing when I'm going to have an "attack" have made me very depressed.

Comment from: Heidi, 25-34 Female (Patient) Published: March 06

I was diagnosed with gastroparesis about three months ago. I had a stomach flu, which would not go away along with severe abdominal pain. During the first hospitalization, I had my gallbladder taken out. After that, things just got worse. I was back in the hospital with unbearable pain, and vomiting any time I ate or drank anything. I had only been home two days since my gallbladder was removed. The admitting doctor decided that I was drug seeking and was causing myself to be sick for attention. He told me and my parents that my only problems were mental illness (making myself sick for attention), obesity, and wanting to take painkillers. He discharged me after two days -- and a psychiatric consultation! About a week after that, I started vomiting and could not stop. Although no blockage was found, and I hadn't been able to have a bowel movement in two weeks (since the surgery), I was vomiting what seemed to be bowel contents. At the time, I hadn't eaten in days. I had the same jerk doctor, but a sympathetic surgeon who agreed to do more testing. It took about another week in the hospital before they finally decided to do a gastric-emptying study, which led to my diagnosis. They gave me Reglan, which doesn't work. I take painkillers because of the constant stomach pain, and they at least help me not have diarrhea every day. I'm supposed to eat six small meals a day, but have never really been that good at eating. I always get full quickly -- after just a few bites of food. I am obese, but have lost 40 pounds since being diagnosed. I am constantly nauseated and vomit nearly every day, and I'm only getting worse. I even lost my job because of being hospitalized so frequently for this stupid disease. It's so frustrating to have something with no cure. I'm only 28 years old, and it terrifies me to think I will have a lifetime of this. I cannot hold down a job and at times I can barely take care of myself when once I was very independent. People don't see me as being sick either because gastroparesis isn't a deadly disease. But it affects my life so heavily. I really feel for anyone else suffering from this because I know how hard it is. Sometimes I wonder if I'll ever be able to live a normal life again.

Related Reading: flu | abdominal pain | mental illness

Comment from: misty12345, 45-54 Female (Patient) Published: March 06

Eventually, I found out about the clinic trials of the gastric pacemaker or stimulator; they have a few of these studies around the country. (I believe there are five?) I called immediately, and within a short period of time, I underwent tests on the severity of the gastroparesis and if I would be a candidate for the pacemaker itself. Needless to say I have the gastric pacemaker embedded in me now. Yesterday, I was informed, since I've been throwing up the food/liquids, that the voltage of the stimulator was at its full potential, and the only other method available is gastrectomy — the removal of the stomach. They would leave 1% of my stomach intact connecting it to the lower bowels. Before they would perform the operation, I would have to undergo a test whereby they would place a feeding tube (don't know its dimension) down my nose and into the lower bowel while I would be hospitalized for three to four days. If tolerated, they would remove the pacemaker and perform the gastrectomy. I want to make a well-informed decision before rushing into the gastrectomy.

Related Reading: pacemaker


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Gastroparesis - Diagnosis Question: How was your gastroparesis diagnosed?

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