Gastroparesis with severe symptoms!

Posted by paarak @paarak, Jul 17, 2011

Does anyone have gastroparesis (low stomach emptying) and what are you doing to manage the problem. I was finally diagnoised with this condition this year after at least 3plus years of unexplained illness. Most of my symtoms were related to pain in the chest; deep back shoulder pain; lightheaded/dizzyness; I always felt like I was having a heart attack. But each time I went to the ER all the heart test came back fine and was told it was just acid reflux. I have been to cardiology; neuralogy; gastrology. I have had heart test; stress test;;thryrod; diabectic test; all kinds of blood test (only showed low vit D) MRI of brain; spinal tap. Finally had stomach emptying test in March – which showed 85% food still in stomach after 3 hours. I have had to switch to a no fat; low fiber diet – pretty much all liquid; soft (babyfood like) foods. If I do experiment and eat something that doesn’t move through – then I end up with the deep shoulder pain; lighthed/dizziness;; numbness in the arms/fingers and over all wekness. In order to overcome this feeling – It seems to work by drinking just water /gator aid for at least a day. I just don’t know if this all started by a nerve damage issue or if it is reverserble. I have done a lot of internet reading and there doesn’t seem to be anything to do except eating habit changes. And no one else seems to associate the pain I have with the stomach – I never seem to have stomach pain – Only fullness; nausea; bloating/gas. I also am not diabetic. Which my understanding is a reason for this condition. If you have this condition – what are your symtoms and how are you managing? Thanks

Interested in more discussions like this? Go to the Digestive Health group.

@donnak142

Don’t stop there. My brother had pancreatitis and was hospitalized for 3 days. Then three yes later had severe pain in stomach through to his back. I kept telling him to go to the ER until they find what was wrong. He had pancreatic cancer. He died 15 months later at the age of 59. The only blood test that indicates cancer activity is the pancreases is the CA9-19 test

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@donnak142 Donna, I am so sorry to hear about your brother. Pancreatic cancer is such a tough one, and I have heard that it's because it does not generally get diagnosed for a long time. The husband in a couple of dear friends is battling that now, in fact I drove him to his chemo yesterday. I hope and pray he will survive this.
JK

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@shimmerpixie

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 🙁

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I read an article about "functional medicine". There is such a thing. This person had to have a tube inserted in her stomach. She was that bad. And she had pictures of herself so thin and tired. Now. She claims she is has no issues. She went to a Functional Medicine Clinic. She ended up helping her diet (which I assume you have been avoiding the foods you are not to eat) with adzuki red bean paste which add protein and beet kvass. She also said that sometimes you can be misdiagnosed and have hypochloridia. Don't know if functional medicine is a choice but it might be worth a shot. Does Mayo Clinic have a functional medicine department? I have this disease and did not take the medicines. My gastroparesis said to try iberogast. It is natural drops that go into a trip before or during your meals. It helps the motility of your stomach and it works for me. When I have the coughing fits, I resort to sugarless gum. Works great! I also have a 5-7" wedge until my mattress to elevate my heads and I sleep in my left side as the right side is a straight shot to your stomach & you can get reflux. I do exercise twice a week too. And avoid ALL of the foods that they listed.

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@cookiegnias

I have stomach pain through to back no one will listen to me how do I get this test ca9-19

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I think you should be able to ask your primary care doctor to do the blood test.

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@shimmerpixie

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 🙁

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I am in so very much pain. Was diagnosed with gastroparesis. Has anyone been diagnosed as having this and have you found it painful

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@shimmerpixie

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 🙁

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Hi @susanpsg and welcome to Connect. You may have noticed I moved your post to this existing discussion on gastroparesis so that you can meet others who may have similar discussion. Simply click VIEW & REPLY to find your post and read what others have said about their lives with gastroparesis.

I also wanted to introduce you to fellow Connect members, @suemer, @ktracyf and @donnak142 as they have experience with gastroparesis and may be able to offer you support and share their experiences.

Back to you @susanpsg how has your doctor suggested you be treated at this time? Is there anything you can do to lessen the pain at this time?

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@tykehome

I am a 39 year old female that was diagnosed with Gastroparesis last year after a decade of "issues". It never bothered me before this past year but the symptoms have drastically worsened. I am seeing several GI Specialists in my area and one at the UW Wisconsin Hospital in Madison. They have had no real answers for me in regards to treatment, management, dietary, etc… I suffer from severe constipation with excessive flatulence (farting), bloating, pain and distention. Even Miralax and Milk of Magnesia daily hasn't helped. It has taken over my life. I am a very active outdoors woman and have little to NO energy now. I don't have the vomiting like most. Just the other symptoms of constipation listed above. I also developed some Hemmorrhoids which have been difficult to manage as well.

Since I haven't had much help or testing done this past year, I am looking to going to Mayo Clinic in Rochester, MN and was curious to here about others opinions and experiences with the specialists there and in general of how you're living with this disease and the complications and health issues that accompany it. It has greatly affected my mental health but go to therapy weekly.

Thank you anyone who might be able to offer advice or suggestions! Much love to all of you going through this or similar health issues.

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The G. I. Docs there are the best in the world. They are very knowledgeable, efficient and .kind. Be prepared, possibly, for lots of testing. I found their fees and tests cheaper than local ones. They are salaried, or were when I had my visits (2).

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@kitmus

The G. I. Docs there are the best in the world. They are very knowledgeable, efficient and .kind. Be prepared, possibly, for lots of testing. I found their fees and tests cheaper than local ones. They are salaried, or were when I had my visits (2).

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I'm sorry for the delay as I wasn't feeling well the past several days. Thank you so much for your opinion and advice on the GI doctors at Mayo. I called them last week and got established and a doctor has requested my medical charts to be faxed over. I was happy that they started the process so quickly and hope to get set up with an appointment as soon as possible. Thank you again!

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@sickirishlass

I was diagnosed , with Gastroparsis a couple years back, also have Barrett’s disease & 2 ulcers in my esophagus , that tend to bleed & drops my hemoglobin To dangerous levels .
Has anyone else have any of these problems, that can give me some dietary tips ?

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@sickirishlass

If you use the search option up above this post.. looks like a magnifying glass, and type in gastroparesis you will find many with this condition. Dietary tips are throughout those post. Every person is different. It is recommended to have a lower fiber diet. I find for me.. being I also have diverticulosis throughout my colon, which requires a high fiber diet.. that I have to hit a medium. I avoid veggies and fruits that are very fibrous. I will eat broccoli flowerets well cooked and avoid the stems that are fibrous. I love asparagus and eat it much like broccoli.. making sure I avoid the fibrous stem. Most veggies I just cook Southern Style.. cooked to death.. looks like baby food if smashed with a fork. Summer squash I peel, cut in half and scoop the seeds out with a spoon. I avoid stringy green beans, black-eyed peas field peas and greens like kale, lettuce, collard and mustard greens. For some reason I can eat the creamed spinach my husband cooks. I can eat Bush's canned baked beans, but no other brand.

I also have achalasia and Barrett's esophagus… swallowing problems and food feels like it gets stuck with plenty of chest pain. Only fruits I eat raw are very ripe bananas and satsumas (a type of tangerine.I cut the fruit in half and run knife around the edges and between the sections and scoop out the sections leaving the fibrous parts behind.) I eat canned fruit and I cook apple slices without the peal. I can sometimes eat homemade granola bars…. a few finely chopped roasted nuts, finely chopped dried fruits with local honey and brown sugar mixed with toasted oatmeal. Sometimes I eat a few roasted pecans or peanuts .. chewing well.

Only cracker I can eat is Ritz. Bread is hit and miss. So I eat very little bread. I eat very little white potatoes. Even mashed they are difficult to swallow. I do better with sweet potatoes, but not by much.

Meat… ground beef is my best bet. Chicken is most difficult for me. Sometimes I puree up some pouch tuna fish with a bit of mayo and eat with crackers. I have eaten so many eggs I cannot stand them anymore.

Mostly a diet is trial and error. What works for one may not work for another.

Best of luck,
Zaroga

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@sickirishlass

I was diagnosed , with Gastroparsis a couple years back, also have Barrett’s disease & 2 ulcers in my esophagus , that tend to bleed & drops my hemoglobin To dangerous levels .
Has anyone else have any of these problems, that can give me some dietary tips ?

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I don’t see a magnifying glass any where & when I type in gastroparsis it tells me doesn’t exist (????)

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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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