Gastroparesis with severe symptoms!

Posted by shimmerpixie @shimmerpixie, Mar 5, 2012

I was diagnosed with IBS when I was 18. I’m now 30. Early in 2011, I saw a new GI doc for unexplained feelings of fullness after eating a very small amount of food, nausea and vomiting and severe pain- all revolving around eating. He ordered a gastric emptying studying and told me I had “mild delayed emptying,” which he classified as “mild gastroparesis” on my chart. He gave me Zofran 4 mg to take as needed and hyosciamine for stomach spasms. At the beginning of this year, lost 15 pounds in 2 months due to the worsening of these symptoms. I’ve had many sleepless nights with a horribly painful distended stomach- last night being one of the worst- and I’m on 3 nausea medications- tigin, emend and marinol- and heavy doses of all 3. I was in the hospital in February for 2 weeks with an NG tube and sent home with the medications I mentioned. I was severely dehydrated when admitted, as I’m not always able to tolerate liquids either. My GI doc requested a psych consult and I was grilled by a psychiatrist and his nurse as soon as I had a bed and fluids had been started. The outcome of this was that I did not need additional psychological intervention. (I see a therapist every 2 weeks b/c of this and other chronic pain I deal with- Fibro and osteoarthritis). So here is where I’m at: I was supposed to get in with a doctor who has access to a trial drug, but I was denied access to the program because my scan only shows mild delayed emptying. Yet my symptoms are of someone with a very severe form of it. The psychiatrist determined it’s not psychological. So what am I supposed to do?? The only reason I’m gaining weight is due to the marinol, which increases my appetite but then I have to deal with the pain and nausea of eating. I don’t vomit as much, because of the drugs, but I still feel nauseated after eating (even on an full liquid diet). I’ve kept food diaries for years and tried everything. I tried gluten-free. I eliminated “toxic” chemicals (those found in diet pop), caffeine- you name it, I’ve tried it BEFORE this took over my llfe in January and I’m continuing to eat as tolerated but I’m in hell. Does anyone else have a gastric emptying test that shows mild delay, yet you have severe symptoms? If so, I would love to hear from you. I hate the marinol b/c it doesn’t help much with the nausea and makes me want to eat, after which I feel horrible. Please please tell me there is someone like me out there, and that help is available. Any and all replies are appreciated.
~Stephanie~
P.S. I was in the ER last twice last week due to dehydration and pain that is unbelievable and off the charts. I don’t understand 🙁

@katmandoo

I have idiopathic gastroparesis and am not diabetic. I have had the gastric pacemaker implanted in my stomach since 2012 and it’s going well. My Dr. told me not to take Raglan because it can cause Parkinson’s disease. If you have any questions feel free to ask me. Kathy

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Your so welcome:)

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I am like you. I’m writing this in 2018, 6 years later, but if you’re still on here I am here.

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I have mild osteoporosis and have a lot of pain around stomach and back the pain is brutal in taking tramadol

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Hello @shimmerpixie and everyone in this group. I have had chronic constipation for over 10 years and also suffered from eating disorders for over 25 years and still struggle but am much better. I saw specialists and they told me all the wrong things to do like take more fiber. I told them it made things worse but this went on for 10 years until a couple months ago I had a gastric emptying study done and was diagnosed with Gastroparesis. The first thing I asked was if my eating disorder history was the cause and they said it's not related. Mine is idiopathic. This past week things have worsened a lot. I don't vomit but have some acid reflux. I get severely distended and bloated (accompanied by pain) and sometimes pass an insane amount of gas at night. The symptoms seem to increase throughout the day. I am just learning about all this and am being sent to UW Madison Hospital for further testing and counseling as to how I can still maintain recovery in my eating disorder and not eliminate foods that I normally eat which are all on the "NO" list. I can not take Erythromyacin because of an interaction with another medication and also the expense of it with prescription insurance was almost $200 a month which I can't afford long term They just started me on a trial of Trulance. I am thankful for all of your stories and hope that we can be a source of information and encouragement as we continue on this journey. Much love to all of you…

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@shimmerpixie I just came across your original post, have you had your symptoms sorted out yet? I also have areas in my colon that are slow…. then some that are fast?? Anyways your symptoms sound similar and I have been diagnosed with MALS, FMD and EDS. Would like to know if you have had any vascular workup?

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Hi to you and anyone who can help me, as I'M DESPERATE: I was diagnosed with gastroparesis (rate about 33% after 5 hours, I think) over a year ago. I've had two gastric emptying studies. I've had MRI's of the abdomen and pelvis which are okay. I have had numerous endoscopies, and a capsule endoscopy. The battery from the capsule endoscopy died before it passed through my stomach. I've been to at least four gastroenterologists. The motility doctor at Columbia Presbyterian thinks my symptoms are from gastroparesis. Another gastroenterologist doesn't think so, but he is unable to pinpoint where my symptoms are coming from!!!! I am CONSTANTLY NAUSEOUS, HAVE DRY GAGGING, FEEL FULL, AND SOMETIMES I CANNOT EAT. FOR THE PAST SIX MONTHS, I'VE BEEN LIVING ON SOUP, CRACKERS, AND WHATEVER I CAN FORCE MYSELF TO EAT WHICH IS BLAND. I GET NO RELIEF! I'VE BEEN LIVING A MISERABLE EXISTENCE ON THE COUCH. I AM 65, AND I GO TO THE YMCA THREE TIMES A WEEK. THAT HAS BEEN DIMINISHED DUE TO THIS CONDITION, WHATEVER IT IS. DOES ANYONE HAVE ANSWERS FOR ME? I CANNOT TAKE THE MEDICATIONS PRESCRIBED, BECAUSE I AM ON AN SSRI AND ANXIETY DRUG FOR YEARS. ANY ANTI-EMETIC DRUG IS CONTRAINDICATED WITH THESE OTHER MEDS. WHAT SHOULD I DO? WHAT ELSE COULD BE CAUSING MY PROBLEM? I HAVE LOST 10 POUNDS SINCE AUGUST. I HAVE HORRIBLE NUTRITION. I DRINK BOOST. I CAN'T EAT VEGETABLES EXCEPT FOR SQUASH. MAYO CLINIC DENIED ME AN APPOINTMENT BASED UPON MY GASTRIC EMPTYING STUDY. THEY SAID THAT ALL WAS BEING DONE FOR ME IN NEW YORK! DOES ANYONE GET IT????? I'll take any answers and suggestions anyone may have. We know I have gasgroparesis, but are my symptoms coming from that disorder? I have a lousy primary doctor who cannot help me. What should I do???? Please help.

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@lell

Hi to you and anyone who can help me, as I'M DESPERATE: I was diagnosed with gastroparesis (rate about 33% after 5 hours, I think) over a year ago. I've had two gastric emptying studies. I've had MRI's of the abdomen and pelvis which are okay. I have had numerous endoscopies, and a capsule endoscopy. The battery from the capsule endoscopy died before it passed through my stomach. I've been to at least four gastroenterologists. The motility doctor at Columbia Presbyterian thinks my symptoms are from gastroparesis. Another gastroenterologist doesn't think so, but he is unable to pinpoint where my symptoms are coming from!!!! I am CONSTANTLY NAUSEOUS, HAVE DRY GAGGING, FEEL FULL, AND SOMETIMES I CANNOT EAT. FOR THE PAST SIX MONTHS, I'VE BEEN LIVING ON SOUP, CRACKERS, AND WHATEVER I CAN FORCE MYSELF TO EAT WHICH IS BLAND. I GET NO RELIEF! I'VE BEEN LIVING A MISERABLE EXISTENCE ON THE COUCH. I AM 65, AND I GO TO THE YMCA THREE TIMES A WEEK. THAT HAS BEEN DIMINISHED DUE TO THIS CONDITION, WHATEVER IT IS. DOES ANYONE HAVE ANSWERS FOR ME? I CANNOT TAKE THE MEDICATIONS PRESCRIBED, BECAUSE I AM ON AN SSRI AND ANXIETY DRUG FOR YEARS. ANY ANTI-EMETIC DRUG IS CONTRAINDICATED WITH THESE OTHER MEDS. WHAT SHOULD I DO? WHAT ELSE COULD BE CAUSING MY PROBLEM? I HAVE LOST 10 POUNDS SINCE AUGUST. I HAVE HORRIBLE NUTRITION. I DRINK BOOST. I CAN'T EAT VEGETABLES EXCEPT FOR SQUASH. MAYO CLINIC DENIED ME AN APPOINTMENT BASED UPON MY GASTRIC EMPTYING STUDY. THEY SAID THAT ALL WAS BEING DONE FOR ME IN NEW YORK! DOES ANYONE GET IT????? I'll take any answers and suggestions anyone may have. We know I have gasgroparesis, but are my symptoms coming from that disorder? I have a lousy primary doctor who cannot help me. What should I do???? Please help.

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Oh so sorry what u r going through it sounds like gastropersis i can't take meds either but I'm not in u r condition wish I could help keep looking for a doc to help

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@lell

Hi to you and anyone who can help me, as I'M DESPERATE: I was diagnosed with gastroparesis (rate about 33% after 5 hours, I think) over a year ago. I've had two gastric emptying studies. I've had MRI's of the abdomen and pelvis which are okay. I have had numerous endoscopies, and a capsule endoscopy. The battery from the capsule endoscopy died before it passed through my stomach. I've been to at least four gastroenterologists. The motility doctor at Columbia Presbyterian thinks my symptoms are from gastroparesis. Another gastroenterologist doesn't think so, but he is unable to pinpoint where my symptoms are coming from!!!! I am CONSTANTLY NAUSEOUS, HAVE DRY GAGGING, FEEL FULL, AND SOMETIMES I CANNOT EAT. FOR THE PAST SIX MONTHS, I'VE BEEN LIVING ON SOUP, CRACKERS, AND WHATEVER I CAN FORCE MYSELF TO EAT WHICH IS BLAND. I GET NO RELIEF! I'VE BEEN LIVING A MISERABLE EXISTENCE ON THE COUCH. I AM 65, AND I GO TO THE YMCA THREE TIMES A WEEK. THAT HAS BEEN DIMINISHED DUE TO THIS CONDITION, WHATEVER IT IS. DOES ANYONE HAVE ANSWERS FOR ME? I CANNOT TAKE THE MEDICATIONS PRESCRIBED, BECAUSE I AM ON AN SSRI AND ANXIETY DRUG FOR YEARS. ANY ANTI-EMETIC DRUG IS CONTRAINDICATED WITH THESE OTHER MEDS. WHAT SHOULD I DO? WHAT ELSE COULD BE CAUSING MY PROBLEM? I HAVE LOST 10 POUNDS SINCE AUGUST. I HAVE HORRIBLE NUTRITION. I DRINK BOOST. I CAN'T EAT VEGETABLES EXCEPT FOR SQUASH. MAYO CLINIC DENIED ME AN APPOINTMENT BASED UPON MY GASTRIC EMPTYING STUDY. THEY SAID THAT ALL WAS BEING DONE FOR ME IN NEW YORK! DOES ANYONE GET IT????? I'll take any answers and suggestions anyone may have. We know I have gasgroparesis, but are my symptoms coming from that disorder? I have a lousy primary doctor who cannot help me. What should I do???? Please help.

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You may want to look at the MALS thread…. we have so many overlapping symptoms. I know it is difficult when you are looking for a cause of symptoms, however the MALS group may have some suggestions with management of symptoms? Just a thought… for me I have found I do better with carbs, and I have to take gummy fiber daily. Do you have pain after eating?

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Hi, @lell, this is Mamacita, from the Adults on the Autism Spectrum group. Years ago, when my gastroeneterologist said that I "might" have gastroparesis, my cousin, a Biologist, gave me an exercise to do where I "suck in" my abdomen, and release. Repeat. As many as you can do comfortably. And throughout the day. About this time I started eating gluten free, all except for one small yogurt each day. This progressed to Paleo, and now finally, Lazy Keto. I also have four gummy probiotics per day. I eat mostly vegetables and protein, maybe a handful of strawberries or blueberries. I also have IBS and Diverticulitis, along with severe food allergies. However, with the measures taken that I have mentioned, I have no symptoms from any of those conditions. Try to find a really good specialist for a second opinion. Who knows, you might like that doctor even more. What I have mentioned works for me, and many others. It may or may not work for you. I wish you good success on the path to health in this new year!

Mamacita

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@mamacita

Hi, @lell, this is Mamacita, from the Adults on the Autism Spectrum group. Years ago, when my gastroeneterologist said that I "might" have gastroparesis, my cousin, a Biologist, gave me an exercise to do where I "suck in" my abdomen, and release. Repeat. As many as you can do comfortably. And throughout the day. About this time I started eating gluten free, all except for one small yogurt each day. This progressed to Paleo, and now finally, Lazy Keto. I also have four gummy probiotics per day. I eat mostly vegetables and protein, maybe a handful of strawberries or blueberries. I also have IBS and Diverticulitis, along with severe food allergies. However, with the measures taken that I have mentioned, I have no symptoms from any of those conditions. Try to find a really good specialist for a second opinion. Who knows, you might like that doctor even more. What I have mentioned works for me, and many others. It may or may not work for you. I wish you good success on the path to health in this new year!

Mamacita

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Do you know of a link that demonstrates that exercise by chance???

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@tross1974

I am in so much pain and no one seems to find the reason why. I am in and out of the doctors offices and hospitals with no answer. I was first being treated for UTI and was on Keflex for 2 weeks. After that I started getting pain in the right side of my kidneys. Went to the hospital and they did a CT scan and lab work and everything was ok. I am having EXTREME upper abdominal pain that radiates to my back. I lost 17 pounds in two weeks. I can't eat without it going right through me. I believe I have what is called gastroparesis

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What is that?

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I was diagnosed with mild gastroparesis ( they're just guessing) , but my symptoms are very severe. My gallbladder was removed in October of 2017 and 3 days later I became ill . I have been sick ever since… and it is now January of 2019. I have chronic and severe nausea everyday, lack of appetite, bloating and distention , stomach cramps, etc. I have had every test done that they can do and they still haven't figured out exactly what's wrong with me. In the meantime I suffer , and suffer greatly. They have tried every medication on me except for one , which my doctor is trying to get for me as we speak. If anyone has had their gallbladder out and then continue to have chronic nausea and GI issues PLEASE let me know what you have done to heal yourself of it

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@tross1974

I am in so much pain and no one seems to find the reason why. I am in and out of the doctors offices and hospitals with no answer. I was first being treated for UTI and was on Keflex for 2 weeks. After that I started getting pain in the right side of my kidneys. Went to the hospital and they did a CT scan and lab work and everything was ok. I am having EXTREME upper abdominal pain that radiates to my back. I lost 17 pounds in two weeks. I can't eat without it going right through me. I believe I have what is called gastroparesis

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I believe gastroparesis refers to the intestines not functioning properly. We are not medical doctors and obviously nobody can diagnose symptoms over the internet but I unfortunately was wondering if perhaps the Keflex “messed up” the balance of your intestinal flora and you were left with diarrhea and colitis. That is essentially what happened to me after a round with Clindymycin, another antibiotic. I had diarrhea, gas and cramping for three months and lost twenty pounds. Other diagnoses that were thrown around for me were CDiff and microscopic colitis, but in the end my diagnosis was SIBO from the antibiotic use. In essence, the antibiotic causes a dysbiosis or imbalance of bacteria. I was put on other antibiotics to “kill” the bad bacteria and eventually had to go on a diet to keep from relapsing. What I ate during my acute diarrhea attacks were bananas, beef broth, scrambled eggs, etc. No toast, no milk products, no grains like rice and no apples or potatoes. No yogurt and very low sugar. I drank peppermint tea with a little grated ginger. For the weight loss, I drank elemental shakes you can purchase over the internet. They are called EleCare Jr. and come in powder form to to mix with water. They come in different flavors. Unfortunately, GI doctors know little about nutrition. I had to go to aa nutritionist to find out how to eat for my condition. Hope this information helps and you feel better soon. I know what it is like to be in your shoes and desperate for help. Keep us posted.

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@tross1974

I am in so much pain and no one seems to find the reason why. I am in and out of the doctors offices and hospitals with no answer. I was first being treated for UTI and was on Keflex for 2 weeks. After that I started getting pain in the right side of my kidneys. Went to the hospital and they did a CT scan and lab work and everything was ok. I am having EXTREME upper abdominal pain that radiates to my back. I lost 17 pounds in two weeks. I can't eat without it going right through me. I believe I have what is called gastroparesis

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GASTROPARESIS. I certainly am not an MD, but I’ve had advanced gastroparesis for at least 20 years. Gastroparesis is a condition that affects the stomach muscles and prevents proper stomach emptying. It requires a medical diagnonis often through lab tests and imaging. It’s chronic and can last for years or a lifetime. Because food takes days to digest, I do not absorb nutrition or medication like I should.

Several years ago, I was hospitalized for months when I could not even keep water down. I received Reglan IV and other meds, as well as glucose. By the time I went to the hospital, I was too weak to stand and was depleted of potassium and magnesium. More IVs. FYI, if you ever need posassium via IV, insist that it be set on a VERY slow drip. It burns. The slower it is, the less it burns. It takes hours but worth the wait.

One common test is a food-swallowing test (although the results can be a false-negative as in my most recent test). I’ve had endos where I’ve fasted for the procedure and my gastroparesis surgeon still had to empty the contents of my stomach. Food I had ingested days before we’re still sitting in my stomach.

I tried oral Reglan (metoclopramide) but went off it because of possible devistating side effect called tardive dyskinesia (a rare but serious movement disorder that is often irreversible). I ended up developing it’s cousin, tardive akthenesia (similar, but not as severe). Since I was misdiagnosed as bi-polar four years ago and put on Latiuda and then Safaris, I cannot stand still without involuntarily shifting feet rapidly. So I definitely cannot ever go back on Reglan.

Then I tried Domperidone, NOT APPROVED BY THE FDA. It’s available in Canada, Europe and a few other countries. It did not help me and has possible cardiac side effects. If you try or are taking this drug, please have an EKG before starting it and keep up with follow-up EKGs. If you are an older patient and already have a known cardiac disease, it should be used with extra caution.

For the last two years, the food that sets in my stomach has been causing an acidic foam to rise up into my mouth. It is miserable to live with having to swallow every 5 seconds and sometimes makes me sick. I’ve had many tests, procedures (including Botox injections in my stomach) and a year ago I had a fundoplication (stomach wrap) where they wrap one-third of your stomach around the esophagus to reduce reflux. After the surgery, the symptom continued so they determined it was from gastroparesis.

My only option now is to have a pacemaker implanted in my stomach. It’s so drastic that I’ve put it off for nearly a year, but I am just about ready to proceed with it.

In the most severe cases, gastroparesis can lead to malnutrition, starvation and the need for continuous tube feeding. I pray mine does not go that far. I do not want to frighten anyone, but I urge you to seek a specialist who is familiar with treating the conditioning in the early stages. Also, follow a careful diet.

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@pjss48

What is that?

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See my post below for an explanation of gastroparesis… a condition that affects the stomach muscles and makes it very difficult to digest food.

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