Patient Comments: Gastroparesis - Describe Your Experience

Please describe your experience with gastroparesis.

Comment from: Question from ig, 25-34 Female (Patient) Published: April 10

I have gastroparesis. It started about seven years ago, but I've had many tests and just learned about it two months ago. Within five minutes of waking up in the morning, I start vomiting. Sometimes, it wakes me up. I will vomit from 6 a.m. to noon. I love my job, but since I have missed work for four weeks, I am now on medical leave. What is strange is that if I stay up late and sleep late on the weekend, I do not vomit. But when I go to bed around 9-10 p.m. and get up at 6 a.m., I vomit. This seems to be a clue but I can't figure it out. I have elevated the head of the bed. I've had numerous prescriptions, but nothing working. I'm doing fluids, Jell-O, and broth, and start over with the same diet the next morning. My medical leave is just 12 months and the job is not guaranteed.

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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.

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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.

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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.

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Comment from: Lou, 19-24 Female (Patient) Published: February 17

I got real sick five years ago, when I was 17. We don't know what happened to make me sick. My doctor says it's probably just "bad wiring.” My gastroparesis tends to go through good and bad phases, usually each lasting a few months for a time. I find that with the unrelenting sickness/pain, I get really apathetic, or something like that. I sort of quit feeling much in the way of emotions, and that can be pretty rough. But, I've definitely learned to live with being sick! Also, I've been on domperidone for a couple of years, and that is an absolute life-saver. I encourage anyone with gastroparesis to try it, and to stick it out for the first couple weeks. It can cause pretty serious pain at first, but that passes completely, and it is so worth it. I am hopeful that, someday, the gastric pacemaker will be more widely available, and that this will help ease a lot of gastroparesis-people's pain.

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Gastroparesis - Diagnosis Question: How was your gastroparesis diagnosed?
Gastroparesis - Possible Causes Question: What do you believe was the cause of your gastroparesis?
Gastroparesis - Symptoms Question: What symptoms do you experience with your gastroparesis?
Gastroparesis - Treatment Question: What kinds of treatment, including diet and medication, have you tried for gastroparesis?

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