Patient Comments: Gastroparesis - Diagnosis

Question:

How was your gastroparesis diagnosed? Submit Your Comment

Comment from: snapplz, 55-64 Male (Patient) Published: August 05

Symptoms presented overnight; on left shin only. Not very painful nor itchy. The rash area is approximately 6 inches wide and 10 inches long. It is only on front of shin.

Comment from: Kellie, 45-54 Female (Patient) Published: April 29

I have had gastroparesis since 2013, now since October of 2015 I have gastritis, and both are very difficult to live with! I have had an upper and lower endoscopy, I have diabetes, GERD for peritoneal dialysis, and a large liver. I take Carafate, Zofran, and antacids, and none seems to help. I went from 155 to 116 and my weight keeps dropping. I hope we all find a solution that will help us, I now drink Ensure more than I eat to avoid stomach problems but I can't keep living like this!

Comment from: Isabel, 55-64 Female Published: October 13

My doctors prescribed several statins for my high cholesterol, which did not lower it! Side effect that is more horrible is osteopenia in my left thigh, knee and lower leg, along with ringing in my ears. Horrible pain for taking medications for high cholesterol, simvastatin, Lipitor and Zocor did me in! I can't sleep at night for the leg pain, have difficulty walking some days, and while working my leg may give out and I fall! They did not lower the cholesterol and gave me osteopenia and I do believe my 50 percent carotid artery blockage as well.

Comment from: My03Tundra, 35-44 Male (Patient) Published: April 23

I was diagnosed with gastroparesis after a gastric emptying study.

Comment from: grissom1, 45-54 Male (Patient) Published: January 13

After months of bouts with hours of dry heaving and vomiting, I spent 6 days in the hospital on liquid diet. My gall bladder was removed, and further testing proved that it was taking 6 to 8 hours to process foods from my stomach instead of one. Told that I have gastroparesis and my stomach operates at 20 percent speed, I'm on Reglan, Zofran, and Nexium apparently for life. I have been instructed to eat several small meals throughout the day and follow a strict diet. I also have diverticulosis, ulcerative colitis, pancreatitis, and fatty liver disease. In the first month after hospital, my appetite rarely exists. There is no change in my weight. I still prefer one meal per day yet I've learned to have 4 progressively lighter meals as the day goes by. If I take my medicines close to bedtime, sleeping is very difficult.

Comment from: Joab, 45-54 Female (Patient) Published: May 19

I have been sick with for 3 years. It started after a third bowel obstruction surgery. I was finally diagnosed with gastroparesis eight months ago. I was on Reglan which was causing suicidal thoughts, so never that again. I am currently taking erythromycin before each meal. I lost fifty pounds, thought I was going to die. The nausea and pain are beyond torture. I was 92 lb and I now weigh 104 lb after six months. Not a fast gain. Now I am using enzymes and probiotics and it seems to be helping also.

Comment from: Terri, 45-54 Female (Patient) Published: May 17

After diagnosis for 20 plus years of GERD, taking many acid reducers, and the loss of my gall bladder along the way, I was diagnosed with gastroparesis about 3 years ago. I also had esophageal damage and trouble swallowing, which the Propulsid (harsh as it was) was helping to improve, until it was removed from the market. I have been taking domperidone steadily twice daily and I feel like a new person. The vomiting stopped within a month of taking the domperidone, which is fairly easy to obtain from other countries. Additionally, it can be obtained in dissolvable form so swallowing is not an issue. I still take omeprazole to control the acid, and still get belly bloat, but this medicine has proven very effective for me. I hope it helps someone here!

Comment from: Ed's wife, 65-74 Male (Caregiver) Published: December 01

At first they thought it was ileus (the small intestine) not working. Then they took out his gall bladder and his bile duct because he had a ton of gall stones. Then all the same symptoms came back again; twice. They don't go away until he fasts for a day or so. Then they found it was gastroparesis.

Comment from: Auditor, 45-54 Female (Patient) Published: November 18

I had a pyloric blockage in 2007 and had to have a gastric bypass and the surgeon also performed a vagotomy to stop acid reflux. It is the bypass and vagotomy, which were needed to correct the blockage (pylorus blocked over 95 percent due to scar tissue from ulcers), that caused my gastroparesis. The diagnosis came after I had a seven year check-up endoscopy and my gastroenterologist found food in my stomach after not eating for over 12 hours. Four hour gastric emptying study showed it takes approximately 17 hours for my stomach to empty.

woman with abdominal pain
Comment from: Denise, 45-54 Female (Patient) Published: November 12

For about 3 years every summer I would start having problems with my stomach which would cause me to lose weight. The only things I could eat were a lot of ice cream and foods that are mostly liquids. I wasn't worried though because once summer was over, the weight came right back. Then summer of the third year came and like clockwork, I got sick, but when that summer was over, I didn't gain the weight back and I started experiencing a lot of gas. I decided to go to the doctor because I was scared. After 3 years and seeing 2 gastroenterologists and having a gastric emptying study done, I was diagnosed with gastroparesis. My life hasn't been the same ever since.

Comment from: tmm, 45-54 Female (Patient) Published: March 04

I had several tests done by a gastroenterologist after I started having unusual pressure/pain from bloating, then couldn"t eat or if I do eat I vomit frequently. Before this, I"ve had trouble with excessive thirst, trouble swallowing solids and was short of breath and had chest pain. The tests I had for gastroparesis included: swallowing a capsule with rings which were x-rayed 5 days later, then I had the gastric emptying test which showed my stomach emptying four times slower than normal. Finally I had both the colonoscopy and endoscopy which was very bad because I couldn"t be properly sedated. I choked and felt pain which made me scream. Before all of this, I have had heart disease which began unexplained and with no family heart disease, at age 42, then continued with a series of three stents needed and a diagnosis of CHF (congestive heart failure). In the middle of this, lesions were found on my brain which indicated a possibility of multiple sclerosis, a strong possibility now that my stomach muscles do not work correctly, even when I try to follow the special diet.

Comment from: Florence, 19-24 Female (Patient) Published: October 18

One Sunday I ate half a slice of chocolate cake and I felt fine. Then an hour later, I became so nauseous I thought I was going to be sick but I wasn't. Ever since then, every time I ate I was nauseous and it kept me awake at nights. Then I also became bloated every time I ate. I couldn't get on trains because I had motion sickness. I stopped eating and lost 20 pounds and my clothes became so loose on me. I then went to the gastroenterologist and got an endoscopy, x-ray, and ultrasound and did the gastric emptying study and I was diagnosed with GP gastroparesis). My gastroenterologist just suggested 4-6 small frequent meals a day, stay away from high fiber foods and salads (because of the roughage in the leaves) and most importantly stay away from fatty and spicy foods. Now I can't eat anything without feeling bloated and it's really interfering with my life. I have my good days and I have my bad days.

Comment from: Lucy, 13-18 Female (Patient) Published: November 06

I had a vein ablation (leg). A week later I was in hospital with AE (arterial embolism) and PVT (portal vein thrombosis). Today (4 days out of hospital) doctor reduced my blood thinner. My level was in the 4 range. Tonight I'm experiencing back and chest pain.

Comment from: Karen, 45-54 Female (Patient) Published: March 29

In November of 2012 I had two neck surgeries. The first week after that, I was fine. Since then, I have been admitted to the hospital for pancreatitis (lab diagnosis). I had no pain at all – just nausea and vomiting. Within a day of discharge, I started experiencing pain under my rib cage that never stops. I have lost 45 pounds since November and have had frequent nausea with vomiting. My doctor thinks it might be gastroparesis or a problem with one of my bile ducts. I don't have a gallbladder. I've never lost this much weight. So far, my labs are back to normal. I'm just wondering if anyone has had the same symptoms. They would like to do an endoscopic retrograde cholangiopancreatogram (ERCP), but I don't want to have it done. Any suggestion is appreciated.

Comment from: em, 55-64 Female (Patient) Published: March 25

I have just been diagnosed with gasroparesis after a botched colonoscopy that led to a hemicolectomy. Doctors couldn't understand why I wasn't improving—it started to feel like they thought I was faking symptoms. Nausea, feeling bloated, and abdominal pain just made working impossible, and living with the constant nausea is horrendous. A gastric-emptying study found I was 'significantly abnormal'. As instructed, I've been eating full meals. A dietician recommended I eat small meals six times a day. I'm now on anti-nausea drugs, which aren't helping, and IBS tablets for abdominal pain. I knew there was something wrong, and no doctor admitted it was caused by the major bowel surgery.

Comment from: Tina, 65-74 Female (Caregiver) Published: May 21

Hi, my name is Tina, Now I have it but my mother does and she is 74 years old. She suffers so bad and she only had it for only 2 months. And she have so many other health problems alone with it. She get so frustrated and I try to keep her spirits up to the best of my ability, and it'd hard seeing her suffer every day. I've been her caregiver for 5 years and it's been stressful, so anyone going through this my prayers. and my mother's go out to you.

Comment from: 33 years old, 25-34 Female (Patient) Published: March 19

I was diagnosed with Diabetic Gastroparesis just 3 days ago. I had been having stomach pain, always feeling full, vomiting constantly, and recently lost over 30 pounds in just a few weeks for almost a year before my family doctor referred me to my Digestive doctor. Although I was just diagnosed with this disease I have been living with it for over a year now and it is very frustrating and hard to live with. I also feel for others like myself because I know how hard it is to live with this disease.

woman with abdominal pain
Comment from: smilesallday, 35-44 Female (Patient) Published: August 08

Gastroparesis is the worst thing in the world. Oh my, I have been in pain for days and had gone to the hospital and they said, 'chronic abdominal pain'. So I went to my gastroenterologist and he says there is no cure; really! I've changed my diet, and it seems ever since they did the upper endoscopy I'm in worse pain every day and finally I'm getting an appointment for pain management, yes, that's where they sent me! My stomach gets so big as if I was pregnant approximately 9 months and the pains feel like contractions, no one that has not had gastroparesis can imagine the pain I go through on a daily basis.

Comment from: AmyYo, 35-44 Female (Patient) Published: July 28

I have gastroparesis. I always had stomach issues, but I'm guessing, with diabetes for 34 years and taking poor care of myself, this is what happened.

Comment from: Thomas, 19-24 Male (Patient) Published: October 15

I developed gastroparesis in 2001 when I was 11 and finally diagnosed with an endoscopy in 2007.

Comment from: Chefchristina11, 35-44 Female (Patient) Published: May 23

I have had severe abdominal pain for about five years. The doctors ran every test and they all came back normal. They put me on pain medication and Reglan for the nausea. The pain meds helped a little bit, but I throw up anything I try to eat. I just found out that I will no longer get my pain medication because the doctor doesn't think there's anything wrong with me. I have been diagnosed with gastroparesis. I don't know what to do. I have a 2 year old and it's hard to take care of him when I can barely get out of bed. I wish I could eat and not throw up. I just don't eat at all – my stomach swells so much, I look like I'm 9 months pregnant (which I'm not.) For years, nobody believed that I have severe pain and thought I was just a drug addict. I don't know what to do. The pain is more than I can bear. Now they want to take away the one thing that helped a little (my medication). I can't take this much longer. And to find that there's no cure – I can't live the rest of my life like this.

Comment from: ChrisC, 45-54 Female (Caregiver) Published: March 25

My wife has had gastroparesis for more than 20 years. She has tried all options, including a pacemaker and more medications. Finally, she had most of her stomach removed. She can only eat a few things and most of them make her sick. The only medication that seems to help her is Ativan and the doctors keep taking her off of it. It seems like we can't get doctors to listen to us. Now I'm watching her starve before my eyes. I feel so frustrated.

Comment from: Tabatha, 35-44 Female (Patient) Published: January 14

I was diagnosed with gastroparesis this year, stemming from multiple abdominal surgeries. I am allergic to reglan. I cannot eat raw vegetables, breads, rice (anything that soaks or swells), carbonated beverages, etc. I am now reduced to pureed and babyfood susbtances with a barrage of medication. I stay dehydrated and lethargic most of the time. I vomit four times a day regardless of how much or which type of phenerghan I try. I have constant stomach pain, bloating, vomiting which keep me near a bed and a bathroom most of my day. I am apprehensive about a gastric pacemaker due to all the scar tissue from previous abdominal trauma (necritizing fascitis). I am fearful of most procedures and treatments that are mentioned due to the entire ordeal. I have found no working option thusfar.

Comment from: Jennifer, 19-24 Female (Patient) Published: October 18

I was diagnosed with Gastroparesis two years ago. I have been vomiting and experiencing nausea. I had an endoscopy and that has not helped. I am always tired and have severe hypertension. I have no appetite at all.

Comment from: carolyn S, 25-34 Female (Caregiver) Published: September 26

My daughter was diagnosed with Gastroperesis two years ago. It took them over three months to diagnose it. She went down to 80 pounds, and her blood pressure was so low she could hardly stand or walk. One day she was standing talking to me and she colapsed in my arms just like a rag doll. The doctors just kept saying she was bulemic or anorexic. This would really tick her off because she was not trying to vomit all day long for months at a time. Each time she was admitted they would stop the nausea and vomiting, send her home and she would be back in within a week. She has no family doctor so the ones in the hospital just brush her off til she is out of their hands. When she was finally diagnosed the doctor had the nerve to say I have one sick girl on my hands. It is very difficult to not lose my temper from being so frustrated. She is also a type one diabetic since she was seven years old (that is another story just trying to get them to give her insulin for high blood sugars). She is in the hospital again as I am writing this and I just had to argue with the nurse because her blood sugar was 22 and she was not going to give her any insulin. At time I just wanted to pull my teeth out. I guess you can tell I am really venting here but I see how my daughter is failing right before my eyes and I can't do a thing to help her or get anyone to listen to either of us.

woman with abdominal pain
Comment from: shawn g, 25-34 Male (Patient) Published: September 14

At first they doctors said I had a bad gall bladder and it should get better once they remove it. I still continue to have chronic pain in my upper abdominal area vomiting. Non Stop and cramps very bad and one bite from a meal and I would feel full. Other times I was normal. I have these flair ups all the time and have to go to the ER to get IV Dilaudid and Phenergan to control it. It's bad. Doctors are starting to turn me away thinking I'm addicted to pain meds. I'm tired of going through this. They said I have idiopathic gastroparesis.

Comment from: Tina, 45-54 Female (Patient) Published: June 10

I was diagnosed with gastroparesis about a year ago. With a drastic change in. I haven't looked back. I go through spells of acid reflux but not nearly as bad as when I was at my worst. I avoid green vegetables (except spinach) and salad. I don't eat nuts or anything high fiber. Only eat bananas and melons for fruit. As I say, I follow a very restrictive diet and have to balance my nutrients, but it is so worth it to avoid such extreme illness. I need to be very careful because I have diabetes. I am regularly on the lookout for new research as so very little of it in the UK. All my research has been via US websites to date, where there are a few recipe sheets and food lists to eat/avoid.

Comment from: 25-34 Female (Patient) Published: June 09

I have type 1 diabetes and from not controlling my blood sugars I developed gastroparesis. I was diagnosed 2 years ago and it has been the hardest time of my life. The only thing I can eat without vomiting is chicken noodle soup. The soup has kept me out of the hospital for three days. I can't make plans with friends and family because I never know how I'm going to feel.

Comment from: lowrider, 45-54 Female (Patient) Published: January 25

I was diagnosed with gastroparesis about three months ago. I had an endoscopy and upper GI done. My stomach was still full after a 14-hour fast. I'm sick all the time. I can only tolerate mashed potatoes, boiled noodles, white rice, and white bread. Even after that, I have heartburn and burning in my throat.

Comment from: Sherry74, 35-44 Female (Patient) Published: August 03

I had gallbladder surgery Oct 2010. Things got worse for me after that. Was diagnosed with Gastroparesis Feb 2012. I take domparidone. Doesn't really help. Things progressively are getting worse for me. Pain, nausea, lost over 60 lbs, already have hashimoto thyroidist disease, get full, can't eat much.

Comment from: tootsie, 75 or over Female (Patient) Published: January 23

I was diagnosed with gastroparesis following a gastric emptying study. I was put on a diet of no fresh fruits and vegetables, no fiber, no beef, pork or shell fish, and no fat. I can have cooked apples, peaches, pears, cooked beets, winter squash, yams, potatoes, white bread, eggs, poultry, and fish. I seem to tolerate chocolate, sweets, and dairy. I've gained more than 10 pounds in the past six months since my diagnosis because I can't have foods that satisfy my appetite that are good for me. I seem to turn to refined cabohydrates way too much. When I try to cut down I feel sick, weak, and shakey. I wish someone could find a set of menus I could follow that would help me lose weight. I am just thankful I'm not a lot worse. When I stay away from the foods I've been told not to eat the nausea is gone and I feel much better than I have for years.

Comment from: linda1948, 55-64 Female (Patient) Published: June 13

A gastric emptying test (1.5 hours). Nothing had emptied my stomach. I've had problems with reflux and nausea for over 20 years, but was just diagnosed with gastroparesis. I was put on reglan 10 mg. Times times a day, but developed depression, crying, etc. Now, I'm taking it at night only and have a prescription for a drug for nausea that cancer patients take. But I feel awful. Full, bloated and nauseous. I guess i need to make an appointment with my gastro doctor. She said I can take domperidone, a drug from Canada, but I have to get it online because it's not available in the U.S.

Comment from: Betternow, Published: January 28

I was diagnosed with gastroparesis with the nuclear test. My most difficult symptom was constant nausea. My doctor wanted me to take Reglan, but I refused due to the side effects. The nausea was so debilitating at times I just bent over while doing outside activities. Then I started taking 1 mg of Folic Acid daily and my nausea disappeared! My doctor told me the stomach has serotnin receptors and apparently Folic Acid affects serotonin.

woman with abdominal pain
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