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

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@sherry8034

I have taken zofran for nausea and it seems to actually make me worse and vomit. I have IBS and when I have an attack I disolve a Symax FasTabs (levsin with a unique distribution to get into system fast) tablet under my tongue. The generic does not disolve. You need the brand. NuLev was best but they don't make it anymore. I also have gastroparesis (quite significant but not with all your bad symptoms). Unfortunately for me it does not make me lose weight even though I have little appetite.
It sounds like you have much more than IBS going on and don't let them push it off as psychiatric! I wish you could get worked up at Mayo clinic. I'm sure with the way they do work ups there they would figure this out.

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I JUST FOUND OUT I HAVE SEVERE GASTROPERESIS. MONDAY MORNING I AM GONNA TRY TO GET IN AT MAYO HERE IN AZ. IS THERE A CERTAIN DR TO ASK FOR????? YTHKSZ2 JODI

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@sherry8034

I have taken zofran for nausea and it seems to actually make me worse and vomit. I have IBS and when I have an attack I disolve a Symax FasTabs (levsin with a unique distribution to get into system fast) tablet under my tongue. The generic does not disolve. You need the brand. NuLev was best but they don't make it anymore. I also have gastroparesis (quite significant but not with all your bad symptoms). Unfortunately for me it does not make me lose weight even though I have little appetite.
It sounds like you have much more than IBS going on and don't let them push it off as psychiatric! I wish you could get worked up at Mayo clinic. I'm sure with the way they do work ups there they would figure this out.

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I just found out last week I have severe gastroparesis myself. Irritated because I never heard of it before. Not diabetic. I'm the idiopathic that stays miserable because everything makes me miserable. Trying to get second opinion at Mayo very soon.

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@sherry8034

I have taken zofran for nausea and it seems to actually make me worse and vomit. I have IBS and when I have an attack I disolve a Symax FasTabs (levsin with a unique distribution to get into system fast) tablet under my tongue. The generic does not disolve. You need the brand. NuLev was best but they don't make it anymore. I also have gastroparesis (quite significant but not with all your bad symptoms). Unfortunately for me it does not make me lose weight even though I have little appetite.
It sounds like you have much more than IBS going on and don't let them push it off as psychiatric! I wish you could get worked up at Mayo clinic. I'm sure with the way they do work ups there they would figure this out.

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taking pain meds on a long term basis will damage the vagus nerve of the stomach that moves the food out of the stomach into the intestines.I'm a type 2 diabetic and have a severe case of gastroparesis that I've been dealing with for almost 2 years.I'm also a chronic pain patient with 3 ruptured discs and nerve damage to my left leg.Was on lots of heavy-duty painkillers for years, now on pain pump. Trouble is the damage cannot be undone.Avoid pain meds if at all possible-I know,my pain is horrible,too.I have to get pain shots in my iv when I give in and go to the ER.But even the regular meds that I take daily don't dissolve anyway and just come back up whole when I throw up.Good luck,my friend.

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@shimmerpixie

<p>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. <br />~Stephanie~ <br />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 :(</p>

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My neurologist prescribes 250 mg of Erythromycin to be taken 3x a day (total 750mg daily) to help control symptoms, and it works. Does not fix the problem, but without the Erythromycin I have the severe nausea, vomiting, bloating, and cramping but when I take the Erythromycin and eat small, carefully selected meals, I find that between the two it's much easier to control and sometimes I have days where I have no nausea at all. My delayed emptying problems are due to neurologic disease, so I don't know if this will help you or not, but I hope it does. I second Jane's comment---you are not alone. Sending well wishes, always.

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@limecat

My neurologist prescribes 250 mg of Erythromycin to be taken 3x a day (total 750mg daily) to help control symptoms, and it works. Does not fix the problem, but without the Erythromycin I have the severe nausea, vomiting, bloating, and cramping but when I take the Erythromycin and eat small, carefully selected meals, I find that between the two it's much easier to control and sometimes I have days where I have no nausea at all. My delayed emptying problems are due to neurologic disease, so I don't know if this will help you or not, but I hope it does. I second Jane's comment---you are not alone. Sending well wishes, always.

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I should add this neurologist is at Shands Neuroscience Institute in Jacksonville, FL. I have had good luck at Shands (several different depts) so far. Been there for years now. I have also been to Mayo Jacksonville and they confirmed the Erythromycin treatment. When I told my gp of the treatment, his response was: 'Really? It [the Erythromycin] works for delayed gastric emptying? I didn't know that.' Scary, but my point is one of the specialized centers like Shands, Mayo, Johns Hopkins, etc. should pick up on it right away.

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@sherry8034

I have taken zofran for nausea and it seems to actually make me worse and vomit. I have IBS and when I have an attack I disolve a Symax FasTabs (levsin with a unique distribution to get into system fast) tablet under my tongue. The generic does not disolve. You need the brand. NuLev was best but they don't make it anymore. I also have gastroparesis (quite significant but not with all your bad symptoms). Unfortunately for me it does not make me lose weight even though I have little appetite.
It sounds like you have much more than IBS going on and don't let them push it off as psychiatric! I wish you could get worked up at Mayo clinic. I'm sure with the way they do work ups there they would figure this out.

Jump to this post

ive had gp for about 4 years now, ive been on zofran reglan hyoscimine belladonna donnatal pantaprazole and other medications i cant think of right now. i have yet to find a medicine that actually makes my nausea tolerable so i kept researching and read that marijuana can help subside the nausea; i know theres various opinions on the medical use of thc but i decided to try it and its been working better then any nausea medicine ive been on. some doctors have told me exessive use may cause nausea but i dont use it exessively. seems to work its magic basically everytime i smoke even in mornings when nausea is at its worse

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@shimmerpixie

<p>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. <br />~Stephanie~ <br />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 :(</p>

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Hey! OMG I have a mild delay too! My first emptying test said 59% emptied in 2 hours and at 4 hours I had 23% left. My second 4 hour was 64% emptied in 2 hours and 9% at 4 hours. It's always slow at 4 hours as you can see. That's usually when I get the most nausea too is hours after eating. What was your test result? My symptoms were so severe that I got a pacer and I love it! I feel pretty decent now. My bloating isn't so bad anymore.

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@shimmerpixie

<p>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. <br />~Stephanie~ <br />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 :(</p>

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, I have been diagnosed with gastroparesis. Been trying the liquid diet, but can't do that all the time. If I eat a normal amount of food, the symtoms are worse. small amounts more often. I get acid reflex really bad, have to sit up at night till I fall asleep, All things I take for acid reflex slow down the emptying of the stomach, Can't win,. Any suggestions. Trying to get an appointment at Mayo in the gastrology dept. but no luck.

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@margieg

, I have been diagnosed with gastroparesis. Been trying the liquid diet, but can't do that all the time. If I eat a normal amount of food, the symtoms are worse. small amounts more often. I get acid reflex really bad, have to sit up at night till I fall asleep, All things I take for acid reflex slow down the emptying of the stomach, Can't win,. Any suggestions. Trying to get an appointment at Mayo in the gastrology dept. but no luck.

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Hi Marjorie, I'm sorry to hear that you're struggling with this. There are several dietary changes you can make that might be an option for you, including drinking water throughout eat meal and exercising gently after you eat. I've included the link for more information here: http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/treatment/con-20023971

If you haven't already, please try reaching out directly to one of our appointment offices (Arizona: 480-301-8484 Florida: 904-953-0853 Minnesota: 507-538-3270).

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@margieg

, I have been diagnosed with gastroparesis. Been trying the liquid diet, but can't do that all the time. If I eat a normal amount of food, the symtoms are worse. small amounts more often. I get acid reflex really bad, have to sit up at night till I fall asleep, All things I take for acid reflex slow down the emptying of the stomach, Can't win,. Any suggestions. Trying to get an appointment at Mayo in the gastrology dept. but no luck.

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Hi people, please don't give up, there's a new medication on development it's called relamorelin (rm 131 ghrelin), google it, based on what i've read, it might be a huge help for people with gastroparesis! Please don't give up just yet, there's always hope, no matter what just keep on holding, science might give us another chance at living a normal life again!

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