Patient Comments: Gastroparesis - Describe Your Experience


Please describe your experience with gastroparesis. Submit Your Comment

Comment from: Grovet, 65-74 Female (Patient) Published: December 18

I was diagnosed with gastroparesis in 2016. I have had intestinal issues years before that. Not having consistent care from the same doctor has also been a problem. I would like to find a support group to talk to others who suffer with this. There isn’t a lot of information on it.

Comment from: Tastywaves , 45-54 Female (Patient) Published: August 24

I had sciatica pain about 4 years ago and it lasted about a month. I also had bursitis that was hurting bad. They stuck a needle in the left bursa and a day later I felt great! I went to physical therapy for about a month also. Four years later, it's back now, as of 8 days ago. It bothers me on and off throughout the day. I have been squatting down, bending forward and stretching the left side for 10 second reps, and then that gives me relief. If I'm sitting down or lying down I'm OK. This is awful!

Comment from: distraught father, 35-44 Female (Caregiver) Published: September 03

My daughter was diagnosed with gastroparesis after a thoracic surgeon performed a disastrous surgery in 2013 in which he damaged her vagus nerve. He performed the surgery despite extremely low iron and thyroid levels, a very low body mass index and an abnormal EKG. She has suffered unbearably with nausea, vomiting and bloating. Her neurogastroenterologist has tried every medication possible, but none has worked. She hasn't eaten in days and has a body mass index in the 14s. She is near death.

Comment from: Sickofbeingsick, 35-44 Female (Patient) Published: August 27

Ever since last year I have been miserable with gastroparesis, throwing up a lot. I lost over a 100 lb. and can hardly eat anything. I do try to eat, but it makes me sick. Nothing tastes good anymore. I am just tired of it.

Comment from: Mamalamb, 55-64 Female (Patient) Published: April 22

I was finally diagnosed 1 1/2 years ago with gastroparesis. I am on bethanechol 4 times per day. My gastroenterologist is using it off label and it has worked so very well.

Comment from: Manuela, 55-64 Female (Patient) Published: February 19

I have gastroparesis and lately I haven’t had a bowel movement. It is difficult because I have tremendous amount of pain, and I don’t know what to do.

Comment from: Lovely , 75 or over Female (Patient) Published: October 15

My experience with gastroparesis is being very weak and not eating. I am on a liquid diet.

Comment from: Curious Georgette, 55-64 Female (Patient) Published: April 17

I wonder if gastroparesis also affects emptying of fluids in the stomach. I had an ultrasound recently which required I drink 32 ounces of water one hour prior to the test. I followed the directions, however, my bladder was not filled adequately. I have found no information regarding stomach emptying and fluids.

Comment from: Female with gastropaesis, 45-54 Female (Patient) Published: September 19

I am a 51 year old female. After 18 months of investigations I was diagnosed with gastroparesis one and a half years ago. I was accused of being bulimic and that it was all in my mind. I've tried numerous antiemetic and prokinetic treatments which never worked. I've had a gastric pacemaker which didn't improve my symptoms that has now been removed. I've had in excess of 20 NJ tubes and now have a surgical jejunostomy.

Comment from: Jenn, 35-44 Female (Patient) Published: September 11

Gastroparesis is horrible all of the time. Feels like I have a cinder block in my stomach all of the time. My stomach and intestines hurt all of the time. I can say I stopped taking the medications and the pain has lessened. I was on Reglan then domperidone. I feel nauseous a lot and just hurt, and it makes me miserable.

Comment from: MG, 25-34 Female (Patient) Published: August 28

I had surgery for a hiatal hernia and severe GERD. The surgery, Nissen fundoplication, was the start of my severe post-surgical treatment-resistant gastroparesis. There is no cure for any part of it, for the symptoms caused when you feel like you have gastroenteritis constantly. There are few doctors who believe you and even fewer medications. To be specific, there is 1 approved medication and I cannot take it. You know it is bad when a 2-times-cancer-survivor would rather have cancer than this.


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Comment from: KevMc, 45-54 Male (Patient) Published: August 24

I am a type 1 diabetic and have been for nearly 25 years. Now I am 46 and have been diagnosed with gastroparesis. I have had Botox injections which seemed to stop nausea but transferred the problem more to my bowel. Now the injections have worn off, nausea is back and I am frightened to eat again. I just snack when required, biscuits and chocolate, not ideal for a diabetic but have been told to eat what I can! I’d rather have a Sunday roast but that’s unachievable. I am tired, achy and fed up.

Comment from: Sylviaboop, 45-54 Female (Patient) Published: August 01

I have been a type 2 diabetic for 20 years. I also suffer from fibromyalgia, sleep apnea, colitis, bone loss, sciatica, arthritis, high blood pressure, high cholesterol, neuropathy, dry eye syndrome, GERD, acid reflux, constipation, diarrhea, heartburn, shoulder and neck pain, ulcer in my stomach and gastroparesis. I've had 2 C-sections, gallbladder removed, and total hysterectomy. I am on so many medications. I can go more than 7 days without having a bowel movement and am constantly in pain.

Comment from: Tiredofthecycle, 45-54 Female (Patient) Published: July 27

This gastroparesis is horrible. I get hungry but I have gotten to a point where it hurts so much to eat anything now that I don't eat because of the whole cycle of pain, vomiting and diarrhea. Then I am so tired that I feel like I'm going crazy. I cry so much because I'm just tired and I don't want to leave my house because of it.

Comment from: Diana, 55-64 Female (Patient) Published: July 09

I was diagnosed with gastroparesis in 2005. I've had my gallbladder removed, got a gastric pacemaker that didn't ever work. I'm always nauseous, and in pain. I've lost all my weight. I don't ever have an appetite, I'm desperate. It doesn't matter what I eat or when. I have yet to find a diet that will give me the nutrition I need. I go days without eating anything. This feels like torture, I just want to be able to eat and have a good bowel movement.

Comment from: Kelli111, 45-54 Female (Patient) Published: July 06

I am a 50 year old woman who was just diagnosed with gastropareses by way of a stomach emptying test. I also have recently been diagnosed with type 2 diabetes and I had my gallbladder removed three weeks ago. The reason I had the emptying test is because I have had chronic diarrhea for three months. It comes on around 20 to 30 minutes after I eat and there seems to be no rhyme or reason to it. I also have very low vitamin D, high Iron, and fatty liver. Doctors have yet to provide a diagnosis or treatment.

Comment from: Please help, 65-74 Female (Caregiver) Published: July 03

I am writing for my sister who is a diabetic and 6 years ago hard 2 strokes. She is very independent person who lives alone at age 72. One year ago she started throwing up after eating but not every day. She had lots of burps and pain in the upper left side of her stomach. Four months ago she had the egg gastric emptying test which showed she had gastroparesis. She lost 45 lb. in 3 months and can hardly get out of bed. She is so weak and now she is under treatment.

Comment from: Hungry and Blessed, 45-54 Female (Patient) Published: June 27

I was diagnosed with gastritis and gastroparesis in 2012. I take 45 mg of Remeron (anti-depressant) for the gastroparesis. I have been hospital free now for 8 months. I was admitted well over 20 times prior to going on Remeron. I can eat and drink things I haven’t been able to for years. I just take OTC antacid for the gas that still happens daily. I can deal with this over any of what I’ve been going through throughout the years. Definitely still don’t eat after 8 pm, snack only, if not you will definitely be in severe pain from your food just sitting in your stomach. Feels great to have my life back.

Comment from: Happy and Tolerant , 45-54 Female (Patient) Published: June 27

I’m a 46 year old female. I was diagnosed with gastritis and gastroparesis 6 years ago. After numerous doctors who didn’t listen, I was finally blessed with two great gastrointestinal doctors. Both listened to me and together as a unit we solved it; or at least this is working for me, thank goodness. I was prescribed Remeron which is an anti-depressant. I started out on a low dosage 15 mg and immediately noticed a difference in my digestion. So I informed my doctor and she stated that’s a good sign and upped the dosage to 45 mg to see if it helps. After years of vomiting, nausea, pain, no appetite, no energy and weight loss, no more.

Comment from: Sarah G.H., 19-24 Female (Patient) Published: May 29

I am 19 years old and was diagnosed with gastroparesis a year after starting college in 2016. I had been dealing with gastrointestinal problems for years before the diagnosis; most of these were nausea, vomiting, and a developed aversion to food. I went from weighing 125 that fall to 95 by the following June. I was chronically dehydrated and malnourished. I have tried both Reglan and Zofran, but the Zofran didn't work for me and the Reglan interacts with too many other medications (I need to take antidepressants). Regulating my diet helps, but it is very temperamental. It has also led to extreme anxiety about eating and going out in public for extended periods of time. I am always afraid of getting nauseous. People look at me and think I'm anorexic but they just don't know. However I will be checking in to a facility for eating disorders as I have developed ARFID (avoidant/restrictive food intake disorder). I don't experience the sensation of proper hunger anymore, I simply feel nothing until my blood sugar gets low and I begin to feel nauseous. I'm exhausted in life and barely hanging on to a livable weight. Today I was 102 lb. and had a protein shake, chicken broth, and a banana; I threw it up that afternoon. I've had one more banana but won't risk any more food. I gag sometimes when I'm trying to swallow which is all the more defeating. I just want to live.


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Comment from: Mickie, 65-74 Female (Caregiver) Published: May 11

My sister-in-law was diagnosed with gastroparesis and is still in the hospital. Medications did not help. She was very dehydrated and had malnutrition. Now she has a TPN (total parenteral nutrition) on both arms and is being treated with nutrients, etc. Her electrolytes are ok now, but she vomits constantly every day! She has lost a lot of weight. She has vomiting and nausea. She has not been able to eat since 4-29-18!

Comment from: Sore and tired , 45-54 Female (Patient) Published: April 23

I have been a type 1 diabetic for over fifty years. I was diagnosed with gastroparesis over 20 years ago. I had been vomiting frequently and losing a lot of weight. I would get up in the morning and vomit the previous night’s dinner. I have given up on domperidone as it does not seem to help my motility and causes more pain. I’m frustrated that doctors don’t get that gastroparesis is a nerve issue and the pain is nerve pain. It is the worst. I’m on ondansetron for nausea and it helps somewhat.

Comment from: boone, 55-64 Male (Patient) Published: April 20

I am a 64 year old retired fireman. In February 1985 I had surgery to remove ulcer, the worst mistake in my life to date I wish I could change. The doctor cut the vagus nerve and I have had gastroparesis problems ever since and it is getting worse every day. I have five grandkids I want to watch grow up.

Comment from: tired, 45-54 Female (Patient) Published: April 16

I found out I had gastroparesis in 2014. I'm also type 2 diabetic and my symptoms are so bad I feel like a prisoner in my own home. I fear to go out and due to the unexpected diarrhea and nausea I am always getting sick and not able to eat a complete meal. No medication has worked for me. I changed the way I eat and still no luck. If there is any support groups I would like to get in touch, I thought I was the only one who suffered from this.

Comment from: Jule A., 45-54 Female (Patient) Published: March 12

I was diagnosed with gastroparesis and had the 2-4-6 hour gastric emptying tests. It came back as severe gastroparesis. I tried all the different medicines for it and nothing worked. So I’ve had this gastric pacemaker since May of 2015. It hasn't helped. It is set very high. I’m nauseated all the time, burp like sulfur, and also out the other end, it's bad. I can stink up a whole room very fast. And pain, oh my goodness, I vomit, retch, and dry heave. I've tried many different things and nothing has helped. I can go to feeling kind of ok, to vomiting or nauseated, or dry heaves in 0.1 seconds. It is very embarrassing in public. I look like I’m about 7 months pregnant, I'm 53 and have been asked if I am pregnant. I am always bloated. And talk about bowel movements (BM), geez, when I have to go, look out! BMs are greasy looking. I'm diabetic. My thyroid does not work. I have high blood pressure. I am bi-polar. I am always fatigued and don't sleep much. I also smoke, and I have to quit for 2 months before they will do the stomach bypass surgery and never smoke again. Yes, I know, I need to quit. But easier said than done for me. This disease is awful. The clinic is 3 1/2 hours from me, and where I live the hospitals just look at me, like whatever is gastroparesis. The hospitals look at me like I'm crazy or something (I'm talking about the emergency rooms). There are probably things I have forgotten to mention here.

Comment from: hungrygirl, 45-54 Female (Patient) Published: July 14

I am a 47 year diagnosed with fibromyalgia, chronic fatigue syndrome (20 years), migraines, hypothyroid and IBS (irritable bowel syndrome) constipation. I am now seeing a naturopath who diagnosed me with SIBO (small intestinal bacterial overgrowth), the most likely cause of all my health problems. I am constantly burping, food doesn’t move through me, and I feel bloated often. Currently I am eating vegetables, fruit, and raw nuts; chewing thoroughly and adding probiotics/enzymes. She prescribed low does erythromycin for motility and Nature Thyroid to get things moving. I suspect I have a bit of gastroparesis. I cannot tolerate coconut flakes or lots of vitamin capsules at once. They seem to swim around in my stomach and go nowhere. Lots of salad does the same thing. But ironically, she wants me eating lots of salad. She suggested gargling a lot 2 times a day to stimulate the brain to send a peristalsis message to the digestive system. I am 5 ft. 4 in and 110 lb.

Comment from: Lisam, 55-64 Female (Patient) Published: May 16

After 15 plus years of stomach problems and many years of gastroenterologist consultation, my doctor finally took me and my symptoms seriously enough to do further testing. Emptying tests revealed I wasn't emptying after 4 hours and an EGG test was also abnormal. I am currently seeing a surgeon to schedule a date for the gastric pacemaker. I can't live with the serious attacks of gastroparesis anymore so I'll take my chances for now that the pacemaker is the answer. If it doesn't work out then we'll have to cross that bridge. Gastroparesis is a horrible disease and I feel for anyone who suffers with this.

Comment from: Vetty, 55-64 Female (Patient) Published: May 09

A few days ago a gastric emptying test confirmed gastroparesis. Since I'm diabetic, I understand it is nerve damage. I have also been in hypothyroid treatment for over 30 years. Bloating and abdominal pain is frustrating, pain is not limited to stomach, sometimes affecting ability to sleep or mop the floor. Next appointment is in August. I have been waiting to be treated since last year. I started diet on my own when the condition started. It has helped to lower blood glucose and lose weight. Thanks to your informative article, I will grind food and hope for some relief in the meanwhile.

Comment from: designatedhugger, 55-64 Female (Patient) Published: March 02

I have not been diagnosed by a doctor, but in researching my symptoms, gastroparesis seems to be the most likely diagnosis. I have no idea why it started, but in 2013, I started getting sick every time I ate. I began cutting out food groups. I already knew I was lactose intolerant and hypoglycemic, and tree nuts give me migraines as does sugar, and meat does not digest well for me. I had already cut out these things. So I started with gluten. That didn't do it. So I cut out everything processed. I was living on eggs, fresh fruits and vegetables. After 7 months of feeling nauseated, dizzy, every cell in my body quivering, and severe fatigue, it got to the point that even drinking water made me feel awful. I weighed 104 pounds by then, and I'm 5 ft 5 in. I was pretty sure I was dying, couldn't even get life insurance. My husband saw a doctor on TV talking about gastroparesis so we looked it up. It seems to fit my symptoms which are intermittent. I can go months and feel fine, then it hits. It seems to be worse when I have raw vegetables or lots of roughage. It's back now and I am putting 1 or 2 drops of tangerine essential oil in water and drinking it when I eat anything. I do protein shakes for breakfast and if I could afford it, I'd do them for every meal. Liquids seem to be easier on me. I wonder if anyone else has these other symptoms. I just see nausea and vomiting mentioned. I have the nausea terribly but don't vomit. But the rest of the symptoms are horrible.

Comment from: lj, 45-54 Female (Patient) Published: September 14

I was diagnosed with gastroparesis about 3 years after they took out my gallbladder, and then a hysterectomy. I had many tests, and I mean many tests. I have constant pain and nausea and I have episodes where I start to vomit and won’t stop, and have to be hospitalized. Of course I take Reglan and Zofran, and the gastroenterologist along with pain clinic prescribed me the pain medicines, and a stool softener because of the narcotics. When I get these episodes, I get hospitalized and get treated as a pill seeker. I get some doctors who won’t treat my pain even though they know stopping cold turkey will cause withdrawals, and I suffer for days. One time I even ended up in kidney failure. I have lost everything because of this disease. I'm tired of it and tired of being mistreated by hospitals.

Comment from: Kiffy, 65-74 Male (Patient) Published: September 12

After receiving a gastrointestinal work up prior to HCV (hepatitis C virus) treatment, it was noted that I have some gastroparesis due to chronic pain treatment. I've never received specific treatment for it. I ate a heavy meal last night that contained fat and a lot of fiber. I am sick in bed today. I have had nausea and vomiting 4 times since dawn. How can my chronic back pain be treated if I can't take the morphine! I have lost much weight and am 119 on a 5 ft 2 inch frame.

Comment from: BeeBrielle94, 19-24 Female (Patient) Published: August 01

I have been suffering intense heartburn, nausea and bloating for nearly 4 years. I finally went to my general physician about 2.5 years ago and was given Nexium and Maxolon (5 tablets a day in total) before having a gastroscopy. This then led to having a gastric emptying study done, which showed that I have gastroparesis. My specialist on the other hand has provided me with no support on how to manage my condition and has frequently told me to just try and manage the symptoms. I am still taking 5 tablets a day, plus a metabolism booster and I still cannot enjoy a meal without it making me unwell some hours after. I am also having a massive issue in losing weight, despite going to the gym (mostly for cardio) 4 to 6 times a week and eating relatively healthy. I cannot get any relief or any explanation as to why I have this condition as I am 22, a non-smoker, non-drinker and I am not a diabetic. I have tried exclusion diets, liquid diets and have even resorted to not eating for a few days to see if it helped but regardless, I have had terrible heartburn. I have read that a few of you have said that weight loss has helped and I am trying but despite my best efforts I cannot get it to lower or get my heartburn to go away. I am in so much pain and I really need suggestions.

Comment from: SL, 55-64 Male (Patient) Published: July 06

I have had this disease for a very long time (over 30 years) but the attacks are infrequent. The first attack I had at the age of 24 and lasted around four hours. The frequency of attacks was typically around once a year. I was diagnosed a diabetic around ten years after that initial attack. The result of being diagnosed a diabetic led to a gradual reduction of weight. Today, I have a BMI of around 25. Dropping weight has lengthened the time between gastroparesis attacks but the duration of the attack has gotten longer. The most recent attack lasted over 24 hours and I had to contact my physician.

Comment from: Erika B, 45-54 Female (Patient) Published: July 06

I suffer from periodic attacks of gastroparesis (GP). Fortunately I found a gastroenterologist who was willing to write me a prescription for domperidone, which I get from Canada. I also found a product called Iberogast that promotes gastrointestinal motility. I don't know how well it works for the more severe cases, but it cuts down on the frequency of my attacks as long as I use it regularly. It also allowed me to get off of the proton pump inhibitors (PPIs) I've been taking for years. The other thing that helped was eliminating sugar and carbs. I used to be on Amitiza for constipation, but I was able to stop taking that after I went on a low carb diet. If I eat carbs I get constipated within 1 or 2 days like clockwork. I need to get better at taking the domperidone and Iberogast regularly, but they both make me so hungry, and I, unlike some sufferers of GP don't really need to put on weight. When I get an attack my body actually makes me think I'm hungry and as soon as I eat the trap is sprung. Even if it's only a small amount of food. I fall for it every time. Then I'm in pain for 10 to 12 hours. I usually have to make myself vomit to empty my stomach. I don't get nauseous like some people do. I hope my finds can help some of you. Most important is the find a sympathetic doctor who listens to you and understands what you are going through. My doctor actually put his own wife on Iberogast for GERD after I told him of my experience with it. That's how I know he listens. Peace and health to you all.

Comment from: 25-34 Female (Patient) Published: June 22

I just found out I have gastroparesis along with polycystic ovary syndrome (PCOS). I have not lost weight, instead I have gained weight and can’t seem to be able to lose it even exercising. I have terrible heart burn and abdominal pain. You do feel lost and helpless when the doctor tells you there is no cure, just treatment, and the treatment is trial and error. It has been tough.

Comment from: paula, 65-74 Female (Patient) Published: June 07

I have been throwing up or have diarrhea at least for 3 days often 4 days a week. I have put some things on hold when I can't get out of the house. I own a business and it has had a huge impact on how I can or can't. This is 18 months into this awful life and I just was diagnosed with gastroparesis. My primary doctor never caught it. He kept telling me it was the medicines. So we experimented, and lo and behold, it was diagnosed last week when I went to the cardiologist and I brought it up. I was floored. So today I see my doctor and I will see a rheumatologist for the scleroderma which I suspect is part of it. I have lost 60 lb which is good but my body has been through the mill. Thanks for listening.

Comment from: Mikes wife, 55-64 Female (Patient) Published: May 16

I was diagnosed with gastroparesis in March of 2016. I am taking Domperidone and while it helps with digestion and bowel movements, it isn't helping much with belly pain. I've lost 40 lb so far, but want to figure out how to stop the pain. Antacids don't do much and I've read that if you take too many they can cause more problems. I see my gastrointestinal specialist at the end of the month, but would be interested in knowing how others deal with it.

Comment from: Rose, 45-54 Female (Patient) Published: March 22

I have been diagnosed in 2013 with gastroparesis. When I landed in the emergency room, I went in weighing 97 lb. I take about 30 prescriptions a day, I have had the Botox injection, all kinds of medications, and even the Medtronic Enterra stimulator all in 2013. I gained 30 lb. due to the medicines that I have been taking. Well, here we are in 2016 and I still struggle with gastroparesis. My illness is in control of my life. I cannot go out of the house, my home is my safe haven. I do not know when I will have an overwhelming nausea that literally makes me faint, or vomiting. I have gone 8 days without any bowel movement; that is also called a blockage, bezoar is the medical word if I am not mistaken. I am not allowed to drive due to my medical condition. The diarrhea that I get without warning! All of this is from my gastroparesis. I surely need a good support group. I would love to talk to a person that knows exactly what I am feeling and my concerns.

Comment from: Merle G, 55-64 Female (Patient) Published: March 15

I was diagnosed with gastroparesis 2 years ago and also have GERD, IBS, and chronic colitis. I've lost 30 lb. which is bad because I'm not a big woman to begin with. I take Reglan, Carafate, omeprazole and Zofran along with medication for my colitis. I must watch what I eat and have small meals so I don't vomit, and nausea, gas, bloating and abdominal pain are always an issue. I'd like to hear more about the Botox injection.

Comment from: Sheri K, 35-44 Female (Patient) Published: March 08

Tiffany G, I saw your post on the Botox injections and everything else you have with your gastroparesis. Let me know how these work for you and if you have any problems. My doctor has not told me about them yet, but I have heard about them quite often recently and currently not sure how much longer I can last on this road of doing nothing. The gastroparesis makes my GERD symptoms so bad that I end up with chest, back, neck and throat pain for weeks and all they can say is eat less, drink more, take your medicines and there is nothing else we can do.

Comment from: Terriann, 75 or over Female (Caregiver) Published: February 23

My mother was diagnosed with diverticulitis in April which I don't think was what she had. In November the doctor then said she had gastroparesis. This is what she probably had all along because she was at the point where she could not eat or drink anything. All medications prescribed did not help. She went from 160 lb. to 105 and in December died of starvation. This disease needs to be diagnosed quickly and correctly or you can die from it. Watching my mother go through this was the worst thing I have ever gone through in my entire life! Make sure you get 2nd opinions and get to the right doctors if you ever have gastroparesis.

Comment from: TiffenyG., 45-54 Female (Patient) Published: February 08

I have been sick for a little over a year and was finally diagnosed with gastroparesis. I also have GERD and (laryngopharyngeal reflux) LPR. I am currently using 40 mg of omeprazole 2 times a day. I tried Reglan but could not tolerate it. My gastroenterologist is planning on doing Botox injections in my stomach to treat the gastroparesis. I was wondering if anyone had had this procedure and if so, how it went. Also, I was wondering if anyone has had the Stretta Procedure. It has shown to not only strengthen the LES (lower esophageal sphincter), but also help with gastroparesis. It's non-invasive and something I'd like to hear more patient experience about. Thank You!

Comment from: ren, 35-44 Male (Patient) Published: January 19

I have had gastroparesis for 4 years, only vomiting in the morning. I am diabetic and also have Addison’s disease. I have had every test, and been to all specialists. I seem to make about 2 weeks and am back in hospital for 3 hours to a week or more. I am on domperidone, Buscopan. Metoclopramide, and Zofran. I have tried acupuncture point ST 36, and drinking hot fluids gives some relief some days. I have lost 40 pounds over the years and not getting any back. I am frustrated and ready for something to give. Blood sugars run good. I can’t eat very much, I stop eating and drinking at 9 pm, take domperidone at bed up to 4 pills but no difference, and clear food diet. My doctors are just going through all the pills I have been on again. I am pretty much down to a feeding tube or gastro electric stimulation.

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

His gastroparesis began about a month and a half ago. He had his gall bladder and bile duct removed and the symptoms are continuing exactly the same as before the surgery; horrible tasting belching, rock-hard abdomen, nausea, eventual vomiting, and gas.

Comment from: Jeremy, 25-34 Female (Patient) Published: April 02

My wife has been diagnosed with gastroparesis after having her gallbladder removed. It has been horrible. She is on medication but it has not helped. She is limited to five foods that she does not throw up. Last Monday she couldn't even keep down water or Gatorade. We are in the hospital now and they don't know what to do.

Comment from: helped, 65-74 Female (Patient) Published: March 10

I have gastroparesis and my doctor put me on buspirone 10 mg before each meal and it worked. He gave me my life back. I had been suffering from malnutrition which affected my brain and gave me symptoms of Alzheimer's. After eating properly for 2 months my brain fog cleared and I'm feeling so much better! I hope this helps!

Comment from: ladybug78, 35-44 Female (Patient) Published: January 28

I am at a crossroads because I don't know what to do. I had the GET (gastric emptying test) done, the 2 hour one, and tested normal. But I still have every symptom of gastroparesis (minus the vomiting)! I had an endoscopy and colonoscopy which both turned out normal. The GET was only for 2 hours and I read that a lot of people get missed in the 2 hour test. I also read that with gastroparesis, the symptoms vary day to day so I could have just been having a good day when they tested. I don’t know if I should try to find a 4 hour test center to confirm. I have lost a lot of weight due to not having an appetite. I also feel weak and am starting to worry about not getting enough nutrients. I go back to my regular doctor this week because I can't afford to keep going to the specialist, especially if they can't find anything.

Comment from: [email protected], 45-54 Female (Patient) Published: January 21

I was told I have this gastroparesis. I have been sick for months. They have tried all different medications. So far no luck, now I am off to a new specialist. I am so tired of vomiting all the time. I even throw liquids up. My belly feels bloated and full clear to my throat. I live off mashed potatoes and Jell-O and sometimes a little chicken. What a way of life! I keep hoping for that miracle.

Comment from: Lost, 55-64 Female (Patient) Published: December 16

I had an operation in October 2001 after which I developed an infection. I got admitted to the hospital for the infection. I did not eat. A nurse told me I had to eat before getting released. Since then I have been ill with gastroparesis. I went down to 98 lb. I could not eat and had feeding tubes. I was in and out of hospital. I had to take an early retirement and divorced after 35 years. Since the fall of 2012 I have been better. I no longer have feeding tubes. However, still get ill.

Comment from: CASemler, 35-44 Female (Patient) Published: November 04

I was diagnosed with gastroparesis in August 2014; I had 8 plus years of daily stomach pains, acid reflux, bloating, nausea and just feeling like my stomach didn't want to digest anything I ate. It would feel like someone stuck a hook knife in my stomach and was trying to twist and pull my guts apart. It was always convulsing. I also have chronic allergies to all plants, so I thought my nausea was from that. Due to my age, my gastroenterologist did not expect this diagnosis. At first, I was just put on a carb free diet; no bread, pasta or rice. He changed my reflux medicines to Nexium and gave me some nausea medications. Then I had several rounds of testing. First, an ultrasound which came back clear. Then an endoscopy, which revealed yesterday afternoon’s cookout food was still in my belly. Then the wonderful barium test, which also included the lemon-lime pop rocks, which blow up your stomach. That test revealed how slow my stomach was digesting. After confirmation, my doctor added Iberogast to my diet. I drink it before every meal. It has changed my situation to one that I can maintain. I also had to make a lot of diet changes like no longer drinking water/fluids with my meals (something the diet world taught me to do), no longer eating raw veggies and really watching out for foods that bloat. I also eat a small breakfast every day and lots of small ones throughout the day. I still run into problems with certain foods, but hopefully I'll be able to continue to change my ways and heal my belly.

Comment from: MaryBeth J, 55-64 Female (Patient) Published: October 21

I was diagnosed with gastroparesis in February of 2014. My symptoms started 7/4/13. At first, the only symptom was uncontrollable burping. The burping has continued to worsen causing me to go out on disability on 12/14/13. On 12/14/13 I was wearing a size 1X. I am now wearing a small. I have lost over 70 pounds now and continue to lose. Many other symptoms have now manifested and I am unable to eat enough to support my body. The doctors are very blasé about it but I think I will be dead before next Christmas. Fortunately for me, my gastroparesis has taken a different turn than most and I am not in any pain. I just burp, pass gas, have insomnia, get dizzy, feel weak, have at least one upset stomach each day and continue to lose weight.

Comment from: MaryBeth, 55-64 Female (Patient) Published: September 24

I was diagnosed with gastroparesis about a year ago. My symptoms started with constant burping. I was overweight and have lost 60 lb. in the last year. I don't have nausea or vomiting so the gastroenterologists say there is nothing wrong with me. They basically won't do anything but give me horrible medications because my gastroparesis is not that severe. It can't be severe because I don't vomit. I have very little appetite and can only maintain my weight by loading up on sugars. I absolutely refuse to go the feeding tube route. I will starve to death first. Of course, the added sugars will give me diabetes so I try to stay away from them but that just means I keep losing weight. I've been told that my weight will magically stabilize when I am no longer overweight. I have just a couple of pounds to go. Then I'm going to magically get well! Hooray!

Comment from: minnie, 55-64 Female (Patient) Published: September 09

I have been misdiagnosed for stomach problems when in reality it was gastroparesis. I suffered extreme pain like no other, it felt like my insides were ready to burst with pain and then it went back to my mid-spine. Nothing I did would help; I wound up twice in two day in the emergency room (ER). I am new at this and cannot imagine going through this over again. I am taking Reglan and a capsule to help the acid in the stomach. Doctors tell me there is no cure and eventually it will paralyze by stomach.

Comment from: thisbudcando, 35-44 Female (Patient) Published: July 25

I have gastroparesis believed to be gotten from a car accident in 2009. I went until February 2014, they had been telling me for years there is nothing to do but pills. But thanks to a doctor I now have an experimental pace maker called the Enterra pacemaker. It is on the abdomen. At first the thing seemed to cause loads of pain and never seemed to keep me from vomiting on a daily basis. Now after many setting changes on the machine, we seem to have found a setting and it’s been 30 plus days without vomiting. There is hope out there! I lost over 200 pounds and my heart and liver were in failure due to lack of nutrients. I am eating and holding food down and my weight is stable for the first time in a year!

Comment from: C from kansas, 45-54 Female (Patient) Published: July 11

I was diagnosed with 10 years ago with pernicious anemia (B-12 Deficiency), and irritable bowel syndrome (IBS), then 8 years ago with primary biliary cirrhosis (PBC) and a fatty liver. A little over a 1 year ago I was diagnosed with gastroparesis, fibromyalgia, and recently with osteopenia. I am on many vitamins and medicines ursodiol, levothyroxine, Nexium, domperidone, Cymbalta, calcitonin, tramadol, sucralfate, and promethazine for nausea. I am at a stage now where I am always feeling fatigue, soreness, headaches, itching, and nausea. I go through spells from constipation to severe diarrhea and vomiting several times a day to feeling this way for weeks. I keep telling myself it could be worse. I’m just sick of being sick all the time never knowing when things will flare up.

Comment from: LG, 65-74 Female (Patient) Published: July 08

I have just been diagnosed with gastroparesis. In the past I have had peptic ulcers. I also suffer from GERD and have a hiatal hernia. I have always had a touchy stomach. I did not eat a lot of vegetables when I was younger, ate white bread, and not much fruit. When I got older I was told I needed to eat more fiber so I started eating more whole grains, more vegetables and fruit, more fibrous food. Now I am back to eating little or no fiber, white bread, and am constantly burping or belching and letting out gas. That could be my medicine. I am calling my doctor’s office to see if he wants to do a follow up with me now that my tests are done.

Comment from: Bonnie, 55-64 Female (Patient) Published: May 30

I have noticed my stomach growing steadily over the past two years. It didn"t interfere with my ability to eat until 6 or 8 months ago. I can eat maybe 1/3 or 1/4 of what I used to. And I"m stuffed. I can"t belch. I am constantly taking Pepto-Bismol or Gas-X. My stomach is so large, it"s pushing up on my diaphragm, so I have a lot of trouble breathing. I can"t stand to do housework or dishes for more than ten minutes due to muscles pulling and burning in my middle back, behind my stomach. I can"t breathe lying down. I have to sleep in a recliner. Recently I tried Reglan; made me sicker. I"m over this gastroparesis; tired of having to buy maternity clothes, as nothing else fits!

Comment from: rosie56, 55-64 (Patient) Published: May 30

I am 57, type 2 diabetic. I have had gastroparesis for years but it"s really getting me down. For a few days I’m really constipated and bloated and vomit when I eat anything, then for the next week or two I have severe stomach cramps and uncontrollable diarrhea. I also bleed a lot from the back end. I"ve had numerous tests and medication but nothing works. I"m scared to go out and have to wear a nappy. On top of this I have severe narcolepsy and cataplexy but that"s another story. At the moment my stomach is so bad I daren"t eat and am losing loads of weight. My heart goes out to everyone with this horrible condition.

Comment from: Swtjess, 25-34 Female (Patient) Published: May 09

I have been sick since I was a little girl. I have always had stomach problems always have been sick. I went to so many doctors first they said it is because of my heart issues, then they said it was because of my thyroid (hyperthyroidism). Then I went to a gastroenterologist and he said I have gastroparesis. I wanted a second doctor to make sure. After going to the second doctor, he confirmed I have gastroparesis. I have been diagnosed for 3 months, still trying new things. I have lost 30 pound, want to get better soon! Need to figure this out.

Comment from: SVH105, 65-74 Female (Patient) Published: April 11

I have just been diagnosed with gastroparesis and I"m a type 2 diabetic. According to the test results it took 90 minutes to empty 22% of the egg into the small intestine leaving 78% still in my stomach. That seems to me that eating six small meals a day I will never empty my stomach. As it is right now I cannot eat breakfast until about 10:00 AM, (usually one scrambled egg) and I"m not ready to eat again until 7:00 PM and that would be a small bowl of soup. I have a call into my endocrinologist I"m just waiting to hear back from him.

Comment from: Suzi, 45-54 Female (Patient) Published: February 20

I’ve had and endoscopy and stomach emptying test along with sonograms, biliary scan and blood work. Felt like I was having a heart attack! I have a gall bladder stone and I was just diagnosed with gastroparesis. I am on 40 mg of Prilosec and hyoscyamine. I’ve had hiatal hernia and GERD for 30 years. I just lost 30 lbs in the past two months. I eat very small meals and no more junk food. A friend just turned me on to some natural herbal things. I’ve started two days ago and it is helping more than the medical tablets. Fifteen minutes before any meal I open a capsule of slippery elm into 4 oz of filtered or spring water and let it set for few minutes. I then chew a tablet called DGL (licorice root) and drink the water with slippery elm. I get it from any good health food store. I have to tell you it is really helping! My friend swears by it and said after three weeks she’s off her stomach medications! I"m going to continue!

Comment from: 35-44 Female (Patient) Published: January 08

I was diagnosed with gastroparesis in June 2013. I was nauseated and vomiting. Most of all it is the stomach pain. I’m on tramadol for the pain but it doesn't really work. I’ve been on Reglan, erythromycin, domperidone, promethazine, Zofran and nothing has worked. I can go 3-4 days without solid foods. I go from having diarrhea to being constipated. I also have severe sleep apnea and insomnia. When I first got sick I weighed 242, I believe. Now I am less than 170 pounds, I've lost almost 80 or more pounds. It feels as though I am wasting away. I took the smart pill test after which the doctor prescribed Neurontin which does work. All it does is make me groggy.

Comment from: anneketag, 45-54 Female (Patient) Published: December 17

I'm a type 1 insulin dependent diabetic. On 3/3/2014 I will have been so for 48 years. My kidneys, liver and periphery are fine. Have had laser surgery on my right eye but can still see well enough to drive. I was chatting with a friend, who's also Type 1 and described my symptoms. She had been diagnosed a while before and told me the name of what I had. I went to my doctor with this and he agreed and had me start on acidophilus once a day. And it helped, for a time. First it was severe gas; I would wake up, sit up, open mouth and had to have a long, pronounced burp. The gas went the other way too. Following year, I had severe diarrhea. Now I am losing 10 pounds a month. I don't heal as well as I once did, even months ago. So the surgical option is out. The constipation has set in. The constant nausea and abdominal pain drains me. So I sleep off and on all day. My A1Cs have always been good, 6.7 last time. It's probably better now because I can't eat and the weight loss has caused severe insulin shock that I've trained my husband to treat. I don't want any more medicines. I can't have surgery. And I am sick and tired of being sick and tired. I started this weight loss process real padded. So I'll be around for a while.

Comment from: Debbie, 45-54 Female (Patient) Published: December 16

I was diagnosed with gastroparesis after 3 visits to the emergency room and all 3 leading to in-patient stays. Finally one kind gastrointestinal physician came to my room for a consult. After listening to me he ordered a gastric emptying study and all of the problems I had been having were finally diagnosed. A cardiologist was even consulted and a heart catheterization was performed with negative findings. Domperidone has been such a life saver. If I avoid caffeine, alcohol, greasy foods and fried foods I am much better. I have the occasional nausea but nothing like before. The upper gastrointestinal pain I was having subsided with 150mg of Zantac twice daily in coordination with the domperidone. I know there are risks with the domperidone but the amount of relief I have experienced makes the risks seem not so bad.

Comment from: Countrymon51, 45-54 Female (Patient) Published: December 16

I was diagnosed in December 2012 with idiopathic gastroparesis. I got it from oral surgery. I had a bone graft done and two days later my symptoms started up. I was directed to a gastroenterologist who sent me to numerous tests. A gastric emptying test revealed I had severe delayed emptying. I was on so many medication changes, and diet changes. I lost about 35 pounds in the first year. Although I started my symptoms from oral surgery, my doctor thinks I got it from a virus. Just two months ago I was placed on the stimulator. I suffer mostly from constant nausea and vomiting. I just seem to vomit every time after I eat. I have been vomiting up to 7 or 8 times a day. Even with the stimulator I am still vomiting. It started out great, but in a short time it all came back.

Comment from: Linda, 55-64 Female (Patient) Published: October 28

I was recently told I have GP (gastroparesis) after several severe bouts of uncontrollable diarrhea and decidedly nasty vomiting that smelled and tasted like sulfur. I'm type 2 diabetic and have recently started insulin hoping to stave off more problems. I've barely started any major testing because I've had a hard time getting any appointments that anyone would consider timely. I don't vomit much, but I do suffer from fluctuating diarrhea and constipation along with major bloating. When the diarrhea returns, it is always preceded by what I call a "liquefied gut." By this, I mean there is a decidedly loud grumbling in my lower abdomen coupled with a fair amount of pain. When this starts, I know it's only a matter of time before the diarrhea returns. I think I may also have IBS (irritable bowel syndrome) because I find myself lactose intolerant, fructose intolerant, and mildly gluten intolerant. I've had a colonoscopy and an endoscopy and only found that I have a tortuous esophagus. Along with all of this, I constantly feel full after eating the smallest amount of food. Doing an abbreviated liquidation diet does nothing to provide me with the nutrition I need to remain healthy. My hope is that I find out what is going on in my body and that no one else ever has to suffer this horrible disorder/disease in the future.

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.

Comment from: Destlin, 35-44 Male (Patient) Published: August 06

The gastroparesis pacemaker does not make the muscles contract. It doesn't actually help with emptying at all. It does however jolt you many times a second to help control nausea. And it is easily adjusted at the office. Mine takes about 2 minutes to adjust.

Comment from: Corinne, 45-54 Female (Patient) Published: November 26

I find that when I eat and drink afterwards I feel really full and uncomfortable. The food feels like it is sitting on my stomach. So I feel better if I vomit and when I do all the liquid and some food that felt stuck comes up. I wonder if it is gastroparesis.

Comment from: Lindsey, 25-34 Female (Patient) Published: October 09

I am 30 years old. I have always been a healthy weight which at the time I thought was fat, but now I'm 114 pounds and was 147 about 6 months ago. I'm always tired, never have energy, never have an appetite, and when I finally do I eat so much that I get sick. I go 2 or 3 weeks sometimes without a bowel movement I get nauseous at the smell or look of food and have been checked out for gastroparesis.

Comment from: Lorilo, 25-34 Female (Caregiver) Published: October 04

I was sick to my stomach last night and vomiting all night long. Today, my stomach feels fine until I eat or drink. Then I get nauseous again and vomit whatever I took in. I haven't kept anything down all day and just threw up red Jell-O. I am worried about gastroparesis.

Comment from: Dean, 65-74 Male (Patient) Published: May 16

I am starved but have no appetite because of gastroparesis. When I do eat I get full instantly. I do have heart problems.

Comment from: Waldo22, 65-74 Male (Patient) Published: February 15

I had my esophagus removed 19 years ago. I had sleeping problems and other GERD related problems but didn't develop gastroparesis until about 5 years ago. I am 65 and only seem to have gastroparesis problems in the morning after breakfast.

Comment from: JW, 55-64 Female (Patient) Published: October 04

I am trying to figure out if I have gastroparesis. I have chronic pancreatitis; it took me 5 years of going from gastro specialist to gastro specialist, to get a diagnosis for that. This bothers me intermittently. I have bloating, pain in my upper stomach, chills and I feel like I can't take a deep breath. The only thing I've found that gives me any relief is ginger tea. I have suffered from constipation my entire life, as long as I can remember. I started taking flax seed capsules two years ago and it has changed my life.

Comment from: Nicole, 35-44 Female (Patient) Published: March 09

My gastroparesis was horrible; being on potassium 3 to 4 times a year. A group finally gave me the advice where there is something called a gastric pacemaker and it saved my life.

Comment from: Susana, 45-54 Female (Patient) Published: October 22

I got DGE (delayed gastric emptying) study because a nurse told me to ask for it but none of the doctors could tell what I had. After colonoscopy my doctor found that I got Helicobacter pylori bacteria but I still have bloating stomach. I have had gastroparesis since I was born I guess, my mom said that I was constipated all the time so she had to give me a liquid (medication) to make me go. My diet was very poor in this country so it made it harder for me trying to get better.

Comment from: wowgeebear, 55-64 Female (Patient) Published: March 04

I know what you mean by swelling to the point of severe pain after eating. With gastroparesis I cannot eat anything, I swell and can’t breathe, and it pushes on my diaphragm. I have also tried Reglan, then my restless legs kick in. I have been to emergency room 28 times in 1 year and they gave me morphine and sent me home. I have been from doctor to doctor and after 4 1/2 years I am still suffering. I even went to pain specialist.

Comment from: Mike, 55-64 Male (Patient) Published: February 26

I just got diagnosed with gastroparesis and my endocrinologist swears he has no idea why as I have Hashimoto’s thyroiditis and adrenal insufficiency. I got an endoscopy 10 months ago and the gastroenterologist said my stomach being whacked out was a coincidence and then fired me. With the new gastroenterologist I had to go eat an egg, and he finalized the diagnosis. I am in a lot of pain and emotionally spent as all the endocrinologist said was to take more steroids for my adrenals.

Comment from: dotty, 45-54 Female (Patient) Published: February 20

I was diagnosed in 2012 with idiopathic gastroparesis. It has steadily gotten worse. Nausea is so bad, that even drinking water isn't appealing. The specialist believes I could really benefit from domperidone, but I can't afford it. At times something gets stuck in my throat, only to realize it is undigested food.

Comment from: MGraham, 55-64 Female (Patient) Published: August 06

I had surgery for a recurrence of uterine cancer, and was in the hospital for 3 weeks because of ileus. Now, 2 years after surgery, chemotherapy, radiation and cyber knife - even though I've intentionally lost 25 pounds, my belly is still big. I'm constipated, get full quickly and nauseous after I eat. I haven't been to doctor for this yet, but it sure sounds like gastroparesis to me. I’m making an appointment to see the gastroenterologist next week. I'm so sorry that you are all suffering so badly.

Comment from: Russorachel, 19-24 Female (Patient) Published: June 19

I’m 19 and I was diagnosed with gastroparesis 6 months ago. I’m only 5'2 and I’m supposed to be 95 to 100 lb. but since I’ve been diagnosed, I’ve dropped to 90. I’m nauseous all the time, have terrible stomach pain, and I’m constantly tired. I need a way to gain weight without killing my stomach.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Comment from: 45-54 Male (Patient) Published: January 05

I was diagnosed with gastroparesis (GP) last year. I have been sick for about six years or more. It started with vomiting and severe weight loss in 2001. The doctors could not diagnose me, so they removed my gall bladder. I had constant vomiting and diarrhea. After the gallbladder surgery, I continued to get worse over the years. After last year’s diagnosis, I tried every medication (with no result), and then they Botoxed my duodenum. That seemed to work the first time. It failed after about three months, and last Christmas, they did it again. Again, it did not work. I finally received a gastric pacemaker. This gave me good results, but I was still sick sometimes. Unfortunately, I received an electrical shock this September and destroyed the unit. They have replaced it, and I am having a much worse time this time.

Comment from: HKatie, 25-34 Female (Patient) Published: January 05

Don't be afraid of the side effects of domperidone; it is a wonder drug! I have been through hell and back with gastroparesis (GP). It started with nausea and vomiting, all day, every day. Then they took out my gallbladder. I got better for about two weeks. Then I had an ERCP. I had stones and sludge in my bile duct. After I had that cleared up, I got better for about a month. Then my GI doctor told me he could do nothing more for me; he basically gave up. So I tried it on my own for six months, but still I had nausea and vomiting after all food and most liquids. Then I found a wonderful doctor who put me on domperidone. I am a little better and can function. For the most part, liquids stay down now, and I can eat bread. That’s a lot better than I have been able to do for the last year and a half!

Comment from: dbk, 35-44 Female (Patient) Published: January 05

I was diagnosed with gastroparesis (GP) almost three years ago. Zelnorm helped the symptoms a bit, and then I was prescribed Reglan, which was effective for a while longer. It is no longer effective, and the new drugs I’ve tried since then haven’t helped at all. I have tried many different diets as well with very little effect. I am constantly bloated and nauseated. I am desperate for relief and searching for a doctor who will perform surgery. Unfortunately, most doctors believe "surgery is not necessary." Obviously, these doctors do not have GP!

Comment from: Shannon, Female (Patient) Published: January 05

I was diagnosed with gastroparesis (GP) almost two years ago. My symptoms have been extreme at times: severe pain, nausea, vomiting, and diarrhea. My symptoms don't seem to be connected with what or when I eat. Sometimes I will have an episode that will last days at a time. I will often only eat a yogurt or a spoonful of cottage cheese every few hours just to keep my energy up. This is a miserable condition, and I empathize with all who have it.

Comment from: Wejdan Asiri , 25-34 Female (Patient) Published: July 20

I’m only 26 years old, a nurse. Every time doctors told me I have nothing to worry about, once I get married I will gain weight. I was only 37 kg; till I was diagnosed with gastroparesis. Nothing helped. I was already in a severe stage and no one knows why! Till I bought some honey from UAE. I don’t know what the secret is but now I’m 48 kg and I’m eating as normal people. I suffered for years and now finally I’m enjoying the food.

Comment from: Lorna, 45-54 Female (Caregiver) Published: October 18

PPIs (proton pump inhibitors) cause polyps and have caused my husband to have gastroparesis.

Comment from: rita, 65-74 Female (Patient) Published: July 15

I have had 3 breast biopsies and 4 mammograms in 2 years for very itchy nipples. Now I heard that domperidone increases lactation. I've been on domperidone and Prevacid for years for gastroparesis but never realized the connection to the breast! I can’t understand why the doctor wouldn't put these facts together! I am 70 and now I think this has caused all my turmoil with the incredible itchy breast, while doctors are thinking inflammatory breast cancer! This should be in the side effects list!

Comment from: Holly, 45-54 Female (Patient) Published: March 25

I feel your pain. I never go anywhere either. There is a group for gastroparesis on Facebook. They are very supportive.

Comment from: Allie H, 35-44 Female (Patient) Published: February 12

I've had the Botox injections done 3 times. They help gastroparesis but it is not a cure.