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

@pjss48

What is that?

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See my post below for an explanation of gastroparesis… a condition that affects the stomach muscles and makes it very difficult to digest food.

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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 much pain and no one seems to find the reason why. I am in and out of the doctors offices and hospitals with no answer. I was first being treated for UTI and was on Keflex for 2 weeks. After that I started getting pain in the right side of my kidneys. Went to the hospital and they did a CT scan and lab work and everything was ok. I am having EXTREME upper abdominal pain that radiates to my back. I lost 17 pounds in two weeks. I can't eat without it going right through me. I believe I have what is called gastroparesis

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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 @tross,

Welcome to Connect. I moved your discussion and combined it with this existing discussion, as I thought it would be beneficial for you to meet with the many members who have discussed 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.

We have a few other discussions that might interest you:
https://connect.mayoclinic.org/discussion/gastroparesis/
https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/gastroparesis-diet-guidelines-1/

@tross, have you been diagnosed with gastroparesis? How are you coping with the symptoms?

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I'm sort-of new, too. I spent most of 2018 in and out of the ER and in-patient with intractable vomiting, nausea, stomach pain, one round of colitis and so on and so forth. I had an upper endoscopy and colonoscopy, both with biopsies, that really didn't show anything, in May of last year, so they said then that maybe I had Gastroparesis but they couldn't confirm the diagnosis because I have an implanted morphine pump for an injury that occurred after I'd already had a fusion on my lower back. Things had quieted down at that point, so they saw no reason to go any further. The quiet period lasted about 4 months and I was back in the hospital in November, another upper endoscopy and this time I was told I had gastritis. I was nauseous all through the holidays then started vomiting again right after we got back from visiting our grandkids. A week at home and finally and ambulance ride to the hospital because I was in so much pain I couldn't make it to the car, 2 nights in the hospital and they've finally decided it's gastroparesis. The Gastroenterologist I saw in the hospital, who I'll follow up with in his office, started me on Reglan, but my family doc asked me to only take it as needed as she really worried about the side affects. I've been following the diet for about a week and a half now and my stomach is happier. I've lost 35 pounds in the last year…not that I didn't need to, but there are better ways to do it. Now I just need to figure out what I can and can't eat.

My family doctor also wants me to try and incorporate the low FODMAP diet, but the two diets almost seem impossible to combine. I think I'd better conquer on at a time, unless someone has any tips for doing both at once? I'll take any advice I can get on getting through this I can get.
Thanks, and all the best to everyone else going through this,
Tracy

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I was diagnosed with gastroparesis along with functional dyspepsia and gastro accommodation issues about 2 months ago. I tried erythromycin and reglan both and could not tolerate the side effects. I take 40 mg of Nexium, which helps the reflux and admoninal pain. I’ve lost about 25 lbs in the past few months and really eat only gluten free and lactose free as much as possible. I was told to follow the fodmap and it did help break my severe cycle of nausea I was having. My gastro Dr also recommended buspar to try to help calm things down in my epigastric region. Anyone else ever tried buspar? It’s actually an anti anxiety medication. Thanks!!

Liked by pdilly

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@sarameyer

I was diagnosed with gastroparesis along with functional dyspepsia and gastro accommodation issues about 2 months ago. I tried erythromycin and reglan both and could not tolerate the side effects. I take 40 mg of Nexium, which helps the reflux and admoninal pain. I’ve lost about 25 lbs in the past few months and really eat only gluten free and lactose free as much as possible. I was told to follow the fodmap and it did help break my severe cycle of nausea I was having. My gastro Dr also recommended buspar to try to help calm things down in my epigastric region. Anyone else ever tried buspar? It’s actually an anti anxiety medication. Thanks!!

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No but sounds little like me since i had all my large intestine removed .and on anixty med. May gey mine changed if yours works. Let me know

Liked by pdilly

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@sockwelljames

No but sounds little like me since i had all my large intestine removed .and on anixty med. May gey mine changed if yours works. Let me know

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Also on nexuim

Liked by pdilly

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Hello,
Im new here, hope all is having a good day

Liked by pdilly

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Hello @thelma76, and welcome to Connect.
I moved your message to this discussion about gastroparesis as I thought it would be beneficial for you to meet the many members who are talking about this condition.
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.

Could you share a bit more about yourself, @thelma76? Were you recently diagnosed?

Liked by pdilly

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@kanaazpereira

Hello @thelma76, and welcome to Connect.
I moved your message to this discussion about gastroparesis as I thought it would be beneficial for you to meet the many members who are talking about this condition.
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.

Could you share a bit more about yourself, @thelma76? Were you recently diagnosed?

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I was diagnosed with Gastrparesis since 2014 along with some other issues, we tried Botox and it still had failed for the second time….

Liked by pdilly

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I know you are never supposed to Google your symptoms but seeing as No doctors seem to know what's going on I figured I would give it a try. Well, Google says that my symptoms could be gastroparesis but because the symptoms reported online are so vague I was hoping someone who has it can tell me what their symptoms were before they got diagnosed. I currently have pain after eating, followed my stomach cramps and diahrea ( the diahrea is mostly yellow with what looks like could be slime or slimeyish). I also have like constant burping and a feeling that I am going to vomit or that there is something stuck in my throat

Liked by pdilly

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Hi @hgarm,

I moved your post to this existing thread on Gastroparesis, so you can read about what Connect members have shared about living with this condition.

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@kanaazpereira

Hi @hgarm,

I moved your post to this existing thread on Gastroparesis, so you can read about what Connect members have shared about living with this condition.

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Hi @kanaazpereira could you move my reply, comments to the same thread? This is my current hell & I would love other's insights. Thank you!

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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.

Liked by pdilly

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, my name is Tracy and I was diagnosed with gastroparesis about 3 weeks ago after a year of vomiting, stomach pain, countless trips to the ER, 5 hospital stays and 39 lbs lost. I also have long term back pain after an injury and multiple surgeries, fibromyalgia, Sjogren's Syndrome (an autoimmune disease like Lupus only everything is dry, including my digestive tract), osteoarthritis, and a weak immune system that requires IVIG (IV immunoglobulin treatments ) once a month to try to boost my ability to fight infections and such. I started with vomiting binges five or six years ago. They'd happen once a year at first, then twice until this last year, where was sick more than not. I had Zofran, but just the taste of it started making me sick to my stomach, then my potassium would tank and we'd be running back to the ER.

I wasn't able to have the gastric emptying test because I have an internal pain medicine pump which would have caused a positive result regardless, but I've seen the same gastroenterologist each time I've been in the hospital, and he's done or had done every other test, some 2-3 times, and seems that gastroparesis really fits the bill. The last time I was in, the first week in Jan., he gave me Reglan and Phenergan suppositories for when I can't take anything by mouth. He added Prilosec ER in Dec. and Bentyl as needed up to 4 times a day. He would have liked me to take the Reglan all the time, but my family doctor is very afraid of the side affects, and she's really been up on things since I switched to her about 5 years ago – she did everything she could to get me in to a gastroenterologist in an area where you can wait up to 6-8 months for an appointment, so I've been using it as needed and that seems to be working.

Since my last hopsitalization, I've been on the gastroparesis/FODMAP diet, so I've been staying away from gluten, lactose, nuts, fresh fruits and vegetables, anything high fiber except 5 doctor approved prunes minus skins each night so that the opioids don't cause more problems that I don't need. I've been doing pretty well. Since I really wasn't eating anything for the past year, I don't feel deprived at all, and I eat smaller, more frequent meals, like everyone else. I've been able to cut back a bit on my pain meds, which I imagine can't hurt, and will talk to my pain doctor next week about the possibility of turning down the internal pump. I know I won't be able to get rid of it completely, it takes care of an area of my spine that had already been fused when I injured it in a car accident, but I figure every little bit can help.

I'm not usually as positive as I sound today, but so far, I've had a good week. My husband's been very supportive (which wasn't always the case). He made a really good soup with things that I can eat and I feel like I've been at a banquet fit for a king since Sunday, But this is a real change for me after a year of hell. I hope it continues and I hope others have some days like the last few I have.

Sorry for going on so long, Tracy

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