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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@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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My doctor wants to inject botox in my stomach. Any thoughts on that?<br />

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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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My dr suggested that to me also but when I asked him how long it was good for I said no thanks<br />
<br />

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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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I am sorry I do not know about the Botox. I am not sure if this suggestion would help you but I had serious digestive disorder and mixed connective tissue disease.
I went off Gluten and Dairy and no longer have these symptoms. Perhaps remove foods like the ones above and eating more easy to digest foods like rice
Bone both ETC, cooked vegetables ETC might help to normalize the stomach? Just a thought.

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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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<p>have had this disease for 4 yrs now. i am 75 yrs old and have no life. have had several drs say "nothing we can do" would a trip to mayo help? </p>

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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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Welcome to Connect @faycarole. I moved your message to this discussion about gastroparesis to connect you with other members. I'd like to introduce you to @kendrakay, @margieg, @sherry8034, @dawn1952 and @citygirlannie.

Fay, here is some information about treating gastroparesis from Mayo Clinic http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/treatment/con-20023971

To contact Mayo Clinic, click this link http://mayocl.in/1mtmR63 for the contact information in Minnesota, Florida and Arizona. They will be happy to help assess your situation.

What symptom or symptoms do you find the most challenging to manage?

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@faycarole

<p>have had this disease for 4 yrs now. i am 75 yrs old and have no life. have had several drs say "nothing we can do" would a trip to mayo help? </p>

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I have idiopathic gastroparesis & suffered for about three yrs until I went to Omaha. Ne hospital and had a gastric pacemaker implanted in my abdomen in April 2012. It's worked wonders with me! I can now eat, as long as I watch what I eat, and don't get sick now. Talk to your gastroenterologist about the gastric pacemaker. By the way I'm almost 61 yrs old. <br><br>

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@faycarole

<p>have had this disease for 4 yrs now. i am 75 yrs old and have no life. have had several drs say "nothing we can do" would a trip to mayo help? </p>

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Welcome back to Connect @katmandoo! So great to hear that the gastric pacemaker has turned out to be a long-term solution for you. Last time you posted you had the pacemaker for only 2 months and now it's been 4 years and counting. Thanks for sharing your story.

What types of foods do you avoid?

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@faycarole

<p>have had this disease for 4 yrs now. i am 75 yrs old and have no life. have had several drs say "nothing we can do" would a trip to mayo help? </p>

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I should have posted foods & medicines I have to avoid from getting sick with my gastric pacemaker so here are some I avoid: any fresh vegetables, fresh fruits, all nuts & high fiber. These are all hard to digest & to much fiber could bind up in my stomach. I can only eat chicken, fish & hamburger when it comes to meats. I also have found that I can't take antibiotics or antidepressants by mouth because they make me sick. So my Dr gives me antibiotic vaccines when I'm sick and I take a short term active antidepressant because the Dr thinks the slow release ones make me sick after about two months on them. Hope this helps anyone else that has gastroparesis. <br><br>

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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 stomach emptying test showed I have a zero digestive system. This was due to a surgery last year to pull my stomach down to where it belongs. It had gone thru a large hernia and it got lodged behind my heart and it was leaning on my lungs. My only systems were shortness of breath, weight gain and a very swollen stomach. After the surgery was when the vomiting and diarrhea, and cramps started. I've seen 6 gastro. doctors and I've taken every medicine there is. I even tried Botox and pot. I have lost over 50 lbs. I have dry eyes, hair loss, teeth problems and no energy. All the doctors agree that the vegas nerve was cut or badly damaged and it can't be repaired. You mentioned that you have a gastric pacemaker. Can you please tell me more about that. I don't want a feeding tube if it can be avoided. Thanks so much for sharing.

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@citygirlannie

My stomach emptying test showed I have a zero digestive system. This was due to a surgery last year to pull my stomach down to where it belongs. It had gone thru a large hernia and it got lodged behind my heart and it was leaning on my lungs. My only systems were shortness of breath, weight gain and a very swollen stomach. After the surgery was when the vomiting and diarrhea, and cramps started. I've seen 6 gastro. doctors and I've taken every medicine there is. I even tried Botox and pot. I have lost over 50 lbs. I have dry eyes, hair loss, teeth problems and no energy. All the doctors agree that the vegas nerve was cut or badly damaged and it can't be repaired. You mentioned that you have a gastric pacemaker. Can you please tell me more about that. I don't want a feeding tube if it can be avoided. Thanks so much for sharing.

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I had a gastric pacemaker implanted next to my stomach in 2012. My gastroenterologist suggested it after everything else I tried didn't work. I had mine done in Omaha Ne hospital. I believe it has leads that are directly leading into my stomach which stimulates my stomach to work so when I eat it will go down. Gastroparesis means your stomach is paralyzed so food won't go down and then you vomit it up. I vomitted and was nauseous 24/7 for at least 3 yrs. Took several Drs before I was diagnosed. The dr adjusts the pacemaker by upping the batteries in it with a hand held device. I was told its kind of like a heart pacemaker but for your stomach. My last visit to see the dr I ask if they know yet what causes gastroparesis and he believes it's from a virus but I've also heard it can be caused by the vegas nerve not working. I hope this helps answer some of your questions about it.

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