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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Sorry if that was a repeat intro, but I didn't see my earlier post. Tracy

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@sonyaparkey

Update: she is still miserable.The devastation of watching my 11 year old A honor roll student and all the extra activities widdle to NOTHING, have caused us health issues. As parents it is devastating when doctors refuse to take the pain "REAL"!!!!!!!!!!! We both started depression meds, high blood pressure meds, and he had a triple bypass he swears is due to this anxiety. Never a pill or problem in 50 years. A sick child and no doctor "ON OUR INSURANCE" will listen. We had a positive ANA Hepatitis and were referred to Scottish Rite who ONLY said she NOES NOT HAVE LUPUS. I travel 200+ miles every appointment. Insurance sucks. No specialists want to take us.

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If your daughter does not have Lupus but has a lot of the same symptoms, could you ask them to test for Sjogen's Syndrome (Show-gren's)? It's another autoimmune system like Lupus, it's actually thought to be more common than Lupus, but it's not tested for in the typical Rheumatoid Panel. I addition to joint pain and fatigue and other Lupus-like symptoms, typical Sjogren's symptoms include dry mouth, eyes or skin. The body basically attacks the moisture glands. I was thought to have Lupus and had a positive ANA (not Hepatitis) and it took almost 6 years for an eye doctor to figure out I had Sjogren's. This isn't a diagnosis, just a suggestion. I'm on a Sjogren's discussion list and unfortunately, it's not unheard of for children, especially females, to be diagnosed with Sjogren's.

I wish you and your daughter the very, very best, Tracy

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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 Kanaaz, Could you direct me to the existing thread on Gastroparesis as well? My intro post was on Jan. 22.
Thanks, Tracy

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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 28 years old and have severe stomach issues, severe pain after eating and even drinking, I have pain even when I do not eat but it's not as bad ( this makes me not want to eat), I get diahrea a lot and neasia but thankfully have only really had a few days of vomiting although I don't constantly feel like I am going to throw up. I am still waiting to see what's going on with me but Google says that my symptoms match this disease I just wish doctor's would figure it out

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I was only diagnosed officially 3 weeks ago, but gastroparesis has come up several times during the years that I've had what I call my "puke sessions" where I'd start puking and being really nauseous and nothing would help until I finally ended up in the ER. I take opiod pain meds and have an autoimmune disease called Sjogren's Syndrome, which I'm told it's not uncommon to find with gastroparesis because it makes your body attack your moisture glands so your digestive tract is very, very dry.
I've been following a combination of the gastroparesis diet that can be found on the internet and the FODMAP diet, originally designed for people with IBS, also on the internet that starts you out with gluten free, lactose free and other limitations, and these three weeks are the best I've had in a year. Of course, don't try these without talking to your own doctor, but this is what my doctor recommended for me. I'll be able to start slowly trying one thing at a time to see if I can tolerate more in a few weeks, but I know other than fat free greek yogurt, lactose is out. But I was happy to find there were some things out there that I could actually eat that didn't send me back to the hospital, YET! I take Reglan but only as needed because of the side effects, so only 2-3 times a week, my family doctor was afraid of any more.
I actually have a glimmer of hope for the first time in over a year. But after the year I've had, I'm afraid to feel too positive because it doesn't seem to take much for everything to go wrong. But I guess I'll enjoy it while it lasts.
Tracy

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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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Dx of mild to moderate gastroparesis many years ago and have learned to live with it. Also have a chronic cardiac condition. Have taken meds for both conditions for years. Past problems with beta blockers for the heart issues, but so long ago that don't specifically recall the problems.. New cardiologist has me trying again with the beta blockers. Any experience/info about beta blockers and impact on gastroparesis would be appreciated.

Alan

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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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Welcome to Connect, @alan24.
You may notice that I moved your post to this existing discussion on gastroparesis as I thought it would be easier for you to connect with other members discussing 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.

While we wait for fellow members to respond, I thought I’d let you know about this journal article I found online:
The effect of drugs and stimulants on gastric myoelectrical activity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110358/

Beta blockers have certainly evolved over the years; are you concerned about any specific impact they might have on gastroparesis, @alan24

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@sherry8034

The anti reflux surgery is what caused my gastroparesis.

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Only you guys understand how I'm feeling. I get so bloated it's unreal. When I'm severely bloated I can feel numbness in my head, arms, shoulders, fingers, legs, well basically anywhere on my body. I feel drozy, light headed, and can face the world. I can't belch, fart nor poo like before. Even by some miracle i do get to poo and for a minute i feel like im back to nornal and i feel more energy then i start get bloated rapidly again. And most times I poo it feel like I'm not empty. This as ruined my life completely. Doctor once said it's IBS but I really think this is something that they don't have a clue about. I've become my own doctor for this now and try to do all I can to live life as comfortable as I can but it's truly hard. I really thought I was the only one going through this. If anyone finds a cure or someway to keep it calming let me know please

Liked by pdilly

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@lawl

Only you guys understand how I'm feeling. I get so bloated it's unreal. When I'm severely bloated I can feel numbness in my head, arms, shoulders, fingers, legs, well basically anywhere on my body. I feel drozy, light headed, and can face the world. I can't belch, fart nor poo like before. Even by some miracle i do get to poo and for a minute i feel like im back to nornal and i feel more energy then i start get bloated rapidly again. And most times I poo it feel like I'm not empty. This as ruined my life completely. Doctor once said it's IBS but I really think this is something that they don't have a clue about. I've become my own doctor for this now and try to do all I can to live life as comfortable as I can but it's truly hard. I really thought I was the only one going through this. If anyone finds a cure or someway to keep it calming let me know please

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Also I start having light handedness followed by a shiffering feeling with tingles run through my body. Been suffering from this from 2004 and I would give all i own to be normal again.

Liked by pdilly

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@kanaazpereira

Welcome to Connect, @alan24.
You may notice that I moved your post to this existing discussion on gastroparesis as I thought it would be easier for you to connect with other members discussing 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.

While we wait for fellow members to respond, I thought I’d let you know about this journal article I found online:
The effect of drugs and stimulants on gastric myoelectrical activity https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110358/

Beta blockers have certainly evolved over the years; are you concerned about any specific impact they might have on gastroparesis, @alan24

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Yes, I am concerned about impact of beta blockers on my digestive function. Past problems with the beta blockers and stomach upset, but current cardiologist is trying it again with me. Feel like it has increased my gastroparesis problem. Thus, interested in hearing from others before revisiting the cardiologist..

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@lawl I am so sorry you have all those symptoms! I have Gastroparesis but I don’t have any of the same symptoms you have. I think you said you were diagnosed with IBS. Are the symptoms you’re having common with IBS?

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@pdilly

@lawl I am so sorry you have all those symptoms! I have Gastroparesis but I don’t have any of the same symptoms you have. I think you said you were diagnosed with IBS. Are the symptoms you’re having common with IBS?

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Yes some are common with IBS but this is a lot more going on here than IBS.

Liked by pdilly

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Me too I do have stomach pain but also back pain this disease has many faces that doctors don't even know about

Liked by pdilly

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@molly911

I have similar symptoms, but did not know it had a name. I had a nuclear egg study and it was found my food does not move at a normal rate, it is very slow. Is this the kind of study any one has had to diagnose this?

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Yep. I had a nuclear egg sandwich one day and then nuclearized apple juice. I'm also waiting on a small intestine enjoying test. But, yeah, that means you have gastroparesis. The question is, how severe. That will dictate what kind of diet you need to follow.

Liked by pdilly

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@glutenfreecuredmycrohns

The digestive system needs fiber and whole grains to move properly. Up your fiber foods.

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Consult a dietician recommended by your gastroenterologist. More fiber may be very dangerous for you. If you have gastroparesis, you'll need less fiber, not more. Be careful.

Liked by pdilly

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