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

@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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@pdilly

Hello @hgarm. My diagnosis of Gastroparesis came after my first radio frequency ablation of low grade dysplasia related to Barrett’s esophagus. When they were mapping the areas to be treated, they saw undigested food in my stomach that shouldn’t have been there. The surgeon reported that to my gastroenterologist who immediately said “you have Gastroparesis.”

I started googling and based on what I read about how people end up with Gastroparesis, I didn’t believe I had it. I asked to have the stomach emptying study done to confirm the diagnosis. That study showed that I do have moderate Gastroparesis. (But not severe like my doc had thought based on the food left in my stomach.)

As I’m sure you already know, Gastroparesis means your stomach empties too slowly. I was not aware I was having any symptoms before I was diagnosed. But then I realized this was likely the reason why I was always feeling like I was full after only taking 2 or 3 bites of a meal. I also had some vomiting and diarrhea.

Since I’ve been on a low fiber diet and I’m taking domperidone, I’ve been much better. And although food is no longer sitting in my belly, I still can’t eat very much. I guess that’s because food still doesn’t move thru my belly very quickly.

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Hi pdilly,
I was diagnosed with Gastroparesis about 3 months ago. The symptoms I had were slight vomiting, stomach pain and a lot of bloating. I had a gastric emptying study which showed very slow emptying of the contents. The diagnosis was based on the study and the results of an endoscopy. The endoscopy showed undigested food from 4 days prior. I went for a follow up endoscopy 4 weeks later (after following a low-fiber Gastroparesis diet). The doc found that the pyloric sphincter was narrowed quite a bit. This too would cause delayed emptying. He used a baloon to stretch it open. Since then, my only symptoms have been slight bloating and constipation. I am on ocycodone for severe cronic back pain (which of course would cause the constipation), but I’m also not getting much fiber either because of pmy diet.
My whole point of this is that I don’t know if I truly have Gastroparesis or if my issues were caused by a small pyloric sphincter. I have another follow up with the GI doc in a couple of weeks. Hopefully he will be able to determine the cause of my problem.
I’m not suggesting that your situation is the same as mine. I just wanted to share in hopes that it may be of some help to you.

Liked by pdilly

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I have mild gastroparesis hasn't been bothering me but now I have so much pain across stomach and back even when I do by ear it goes on for hours at a time my blood work is abnormal so don't even know if this is gasteoparesis but I get dizziness didn't know this disease causes dizziness but u said u back He it I wonder why if u find out kat me know I didn't think GP causes abnormal blood count either does anyone else have this. Don't know if I answered u r question.

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I meant even when I don't eat and u get dizziness too this tablet changes my words

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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

Liked by sickirishlass

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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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@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 ?

Jump to this post

@sickirishlass It may vary from device to device as to where the search box is. You are misspelling gastroparesis . Try again. I'm not a great speller either. I had to put it in Google for it to correct my spelling of it. 😁

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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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Ty very much 👍

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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 ?

Jump to this post

This is the main post I believe o the subject. https://connect.mayoclinic.org/discussion/gastroparesis/?utm_campaign=search

As you can tell it goes back a few years, but you can change the option to the most recent post first.

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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 🙁

Jump to this post

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 ?

REPLY
@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 @sickirishlass,

I’d like to add my welcome, and also let you know that I moved your message and combined it with this existing discussion. As @fourof5zs mentioned, I thought it would be beneficial for you to be introduced to the many members who are discussing much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Feel free to post your concerns and tag members in these discussions as well, about Barett’s esophagus:

– Barrett’s esophagus https://connect.mayoclinic.org/discussion/barretts-esophagus-1/
– Barrett's esophagus to Esophageal cancer https://connect.mayoclinic.org/discussion/barretts-esophagus-to-esophageal-cancer/

May I ask if you could share a few more details, @sickirishlass? How are you coping and managing your symptoms at present?

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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 put myself on a liquid/soft food diet, & still getting Severe nausea and upset even throwing up. My hemoglobin keeps going low because the ulcers in my esophagus tend to bleed , my hemoglobin went to 4.3 at the beginning of the month while getting blood I had a heart attack . All the gastrologist I saw tell me there’s not much more they can do for me. I am on a lot of medications. I will be going to the Mayo Clinic on Tuesday & hopefully I’ll get some answers. I have a constant tummy-ache , with bloating and nausea ,

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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 🙁

Jump to this post

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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