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

@2thnkpztv

I have osteoporosis which has gotten worse over the last five years. Two years ago I noticed when I ate to much, such as Thanksgiving dinner about an hour later I would have a pain above my left eye, pain in my left collar bone and indigestion. This was very infrequent. Since April I now have GERD which causes hoarseness, mucus and clearing of my throat. I have been going to a gastroenterologist the last two months and mentioned I thought my vagus nerve was causing this. He said no and gave me medication for GERD. This has not helped. I have read all the information on gastropareses and know this is what I have. How can I convince him?

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I have given up trying to explain that I have Crohn’s, GERD, diabetes, and a lot of pain. If my family had arthritis I had the same problem I am told. All was false diagnosis. I’ve been telling different doctors that I was cured in 1960, but because it was not drugs that couldn’t be correct. Now I learned all about GERD, diabetes, Crohn’s, and memory all controlled by the same source. My treatment in 1960 by an Italian Doctor was shots of: Methionine, B-12, and vitamin K. A two week treatment and I avoided surgery to remove part of my inflamed intestines do to severe pain. Last year from a neck pain I solved all my problems. I noticed eating bread and sugar increased my pain but eating vegetables decreased the pain. I changed my diet per a friend suggestion and the following happened. I was able to stop all my bodies pain including neck, hands, lower back, and knees area intermittent pain. Also by it self GERD stopped. I had it for over 50 years but I knew from the Italian treatment it stopped for 3 years. My diagnosis is the liver since Methionine cleanse the Free Radicals of the liver and I am sure it does other things. I located some liver supplement pills but it helped until I ate the wrong food again. Now I have GERD completely under control and so my intestines and memory. Also my diabetes reversed to normal. I removed bread and any flour products, removed all carbohydrates, soft drinks or any thing with preservatives. I make fresh smoothie drinks fruits and raw vegetables and it controls all my pain within one hour. I eat what I shouldn’t and get the pain activated and Neuropathy, but vegetables specially raw vegetables is better than any drug medicines. Why doctors keep it secret? The Internet is full of good information about what I am talking, but no one wants to hear specially when they hear about that bread is the source of many diseases. Sugar also. My neck pain have been my trainer and learning even to pay attention to fresh fruit sugars. So far so good since after many blood test and Ct Scan I was told by my doctor that I figured out there is no medication for me. I also lowered my blood pressure to normal and healed all my ulcers that was on my esophagus from acid stomach. I wished I knew all of these 50 years ago and not suffer from GERD like I did. Try what I am saying it will cure you in few days. I hope it will help you.

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@2thnkpztv

I have osteoporosis which has gotten worse over the last five years. Two years ago I noticed when I ate to much, such as Thanksgiving dinner about an hour later I would have a pain above my left eye, pain in my left collar bone and indigestion. This was very infrequent. Since April I now have GERD which causes hoarseness, mucus and clearing of my throat. I have been going to a gastroenterologist the last two months and mentioned I thought my vagus nerve was causing this. He said no and gave me medication for GERD. This has not helped. I have read all the information on gastropareses and know this is what I have. How can I convince him?

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Hello @2thnkpztv,
Welcome to Connect; I’m sorry that you are experiencing these symptoms, but also glad to know that you are being an advocate for your health. You will notice that I moved your discussion to this group within Digestive Health, as I thought you might like to connect with others living with gastroparesis.

I’m also tagging @gingerlyn, @clemlaa, @citygirlannie, @margieg, @sherry8034, @katmandoo, and @faycarole, with the hope that they can share their experiences with you; @mrsdeecee, do you have any suggestions for @2thnkpztv with regards to the hoarseness due to GERD?

Here is some information about treating gastroparesis from Mayo Clinic http://mayocl.in/2gc3xYu.
@2thnkpztv, have you considered getting a second opinion? Since the medication is not working, how are you managing your symptoms?

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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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Have you gotten any answers I am dealing with this exact issue now I know this is an old thread , hoping for some help.

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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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What is your health problem?

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@katmandoo

What is your health problem?

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I started about 6 month ago with severe bloating ,GERD type symptoms , pain in the upper abdomen, vomiting, nausea feeling full rapidly .After being told I had Gerd alone and medication not helping , also being told it was stress my gasto did more tests and it came back as Mild Gastro-paresis but my symptoms are severe .

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@2thnkpztv

I have osteoporosis which has gotten worse over the last five years. Two years ago I noticed when I ate to much, such as Thanksgiving dinner about an hour later I would have a pain above my left eye, pain in my left collar bone and indigestion. This was very infrequent. Since April I now have GERD which causes hoarseness, mucus and clearing of my throat. I have been going to a gastroenterologist the last two months and mentioned I thought my vagus nerve was causing this. He said no and gave me medication for GERD. This has not helped. I have read all the information on gastropareses and know this is what I have. How can I convince him?

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WOW !!! THANK YOU

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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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What helped me was botox to the lower stomach muscle. An injection was given in 3 places via endoscopy so food always goes into the small intestine. With gastroparesis, the stomach nerves can be so damaged that the contraction (peristalsis), is so slow that by the time the food reaches the lower stomach to enter the small intestine, the pyloric sphincter (muscle opening) closes, keeping the food in the stomach. That is what causes all the nausea, fullness, bloating and vomiting. It also can become the source of infection. Very serious. A special diet is needed of easily digested foods like white bread no wheat, oat, seeded breads, i.e.. I use gummy or chewable vitamins and liquid medicines also. March 2014 I had the procedure at Hershey Medical Center in PA and it is still working. Mine was severe. I would NOT get a pacemaker! There is no guarantee on how long this lasts but so far so good. I use liquid erythromycin as a prokinetic (muscle contractor) for the stomach. The procedure took only 15-20 minutes and no pain. Rare nausea and not that constant loss and gaining of weight, unable to tolerate smells and look at food…etc. A real blessing.

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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 also did the Botox injections in my stomach but they quit working. My only choice was the pacemaker which I had implanted in April of 2012 and it was a God send. It is still working until this day. Just my opinion. Kathy

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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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Very glad to hear! Gastroparesis is difficult to have so thank goodness this is working for you.

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@katmandoo

I also did the Botox injections in my stomach but they quit working. My only choice was the pacemaker which I had implanted in April of 2012 and it was a God send. It is still working until this day. Just my opinion. Kathy

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I am so happy the pacemaker helped you .My husband had severe gastroparesis and we were In the hospital every other month and they couldn’t do much because he was a high risk patient. I’m happy you are doing much better .

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@jlfisher56

Very glad to hear! Gastroparesis is difficult to have so thank goodness this is working for you.

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It is. Very difficult this is why gastroparesis awareness need to be out there.It is no joke especially when you have family or friends suffering from it we suffered so much. They need all the support and understanding they need

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@jlfisher56

Very glad to hear! Gastroparesis is difficult to have so thank goodness this is working for you.

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Thank you. Yes mine is very severe but if I watch what I eat the pacemaker works great.

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