Patient Comments: Gastroparesis - Describe Your Experience

Please describe your experience with gastroparesis.

Comment from: KarenH, 45-54 Female (Patient) Published: June 17

I have been suffering from non-diabetic gastroparesis. This isn't living! Never knowing when my stomach will function or stop. In 1 year I spent 72 days in the hospital, nearly died more than once, ended up with a perforation and colon resection. There needs to be more research and treatments available. So far I've reached my doctor's goal of staying out of the hospital more than I am in. I want to 'live' my life, not just exist in it.

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Comment from: Webster64, 25-34 Female (Patient) Published: March 13

I am 28 year old female and I have been living with gastroparesis (GP) and a hiatal hernia for 11 years. I've lost 50 lbs and am at the emergency room every month. The pain is so intense and I'm on Reglan, Zofran, Bentyl, Protonix, Xanax and Percocet. Over the years I've tried everything, endoscopy, stomach emptying scans, PH studies, the works. I've gotten no results and the hospital thinks you are seeking drugs or going through withdrawal. It's not fair, I'm in intense pain every day and I've gotten no results. At first they said it was mental but when they did the right testing they saw it wasn't. This is running my life and no one can help or wants to, they just label you.

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Comment from: Snowflake Warrior, 55-64 Female (Patient) Published: February 12

I was diagnosed with gastroparesis 2 months ago after an episode that at first appeared to be cardiac related. All heart studies came back negative so the gastrointestinal consult was next. I have myasthenia gravis and have been diagnosed for about 14 years and thought I knew everything there is to know about MG. Apparently I missed the memo about gastroparesis being associated with myasthenia gravis. I am trying to stay on the low residue diet but I have always preferred a healthy, high fiber low fat diet so this is totally against the foods I enjoy eating. I have no appetite for these foods and would rather not eat. I will adjust but this is a very difficult condition to deal with.

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Comment from: jkearns2, 65-74 Female (Patient) Published: December 16

They have been trying for 4 months to find out what I have. I have been vomiting, pain, and diarrhea all that time, the gastroenterologist is putting in a gastric tube tomorrow, to help relieve the symptoms, I hope it works. I have been through every test known to man, and had gall bladder out also with no relief. I have lost 60 to 70lbs in 4 months. I hope I can find something soon. I have all the symptoms of gastroparesis, but no one has said it yet.

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Comment from: Maria, 45-54 Female (Patient) Published: October 08

I started having symptoms of early fullness and nausea about 4 years ago, and over the course of that first year lost 40 pounds. When my weight was down into the 90s, my doctors advised a feeding tube (J-tube) since I was emaciated and malnourished. I've had the tube for nearly 3 years now, and now cannot eat solid foods at all. I take sips of water or decaf coffee, that's all I can tolerate. In addition to gastroparesis, I also have dysautonomia, POTS, reactive hypoglycemia, and autonomic neuropathy. Even though I don't eat, I still have nausea daily and take Zofran and Phenergan for relief. It is not improving at all, and there's still no cure.

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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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Patient Comments

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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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