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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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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I am very interested in your progress and symptoms. I have gastroparesis for at least 6 months, probably longer as don't know when started. I noticed sloshing sounds on waking that go on until I eat a fair amount then usually no sounds until maybe some sloshing and gurgling sounds when not as full. Also have very excessive belching on and off all the time. GI doctor listened to stomach and said is gastroparesis. I haven't had any tests yet. I have been reading up online and its very depressing, in addition to my already extremely depressed and anxious state. I started watching diet recently when finally found some sites with some info. It seems to me there is way too little research on this! I have to wonder if it is because it is much more women than men, and much more anxiety and depressed patients who get it.

I have shoulder pain also, around right shoulder blade area which itches and hurts often for several years, gradually getting more frequent. Also hurts back when I wear a bra, for several years. I don't get out much due to depression, lack of friends and activity. I have no idea what is happening or cause of back issues. Maybe is related to bloating and will watch as I continue to decrease what I eat that forms gas and I am sure I will lose a lot of weight as I am obviously emptying very slowly, liquids as well as solids. I am about 20 pounds above ideal weight and that may be adding to back problem? Also have skin problem with skin flaking off all over and have no good dermatologist or most other doctors here and don't know what it is. I am trying to decide where to go. I prefer somewhere very good that takes people from out of state on medicare. I really don't like to travel anymore but will have to. Am considering Vanderbilt, Mayo, Cleveland Cllinic etc. May start at Vanderbuilt as closer so if anyone knows a dr. there or somewhere else that specializes in gastroparesis who is very good I'd like to have names.

I just read a good bit about low FODMAP diets and it is interesting, I will try integrating that with Mayo suggestions here and it doesn't leave much. I just hope I don't progress to the throwing up, naseua many have and I really feel for them. I have discomfort from bloating/gas at times but seldom severe pain, so I am lucky but do worry what I will eat and how will develop.

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@pdilly

My diagnosis was moderate Gastroparesis about a year or so ago. I don’t suffer the horrible pain so many of you have to deal with so I don’t know if my comments will help anyone or not. (I had no idea that Gastroparesis caused headaches and breathing problems and many of those other symptoms listed on this thread.)
I have the severe stomach pains with diarrhea and vomiting AT THE SAME TIME when it flares up. It usually lasts 1 1/2 to 3 hours. And it usually only happens once or twice a month.
To manage my condition I eat practically no fiber, one dose of miralax a day, two domperidone tablets a day, chew every bite a bajillion times, and eat about 8-10 times a day. Not really meals. More like snacks.
I work full time. I’ve only had to miss work a couple of times since I learned how to manage things.
The silver lining of Gastroparesis for me has been the weight loss of about 35 pounds that resulted in getting me off type 2 diabetes and blood pressure meds! And amazingly my A1c has remained at 5.7 even though I eat so many more carbs and so little fiber now!
God bless all of you who suffer with severe Gastroparesis! I cannot imagine how difficult that must be.

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I don't know if you will read this as all the posts are so spread out in time I think the site loses a lot. Have you had side effects from miralax or domperidone? I've considered both. Do you know if miralax is commonly recommended for gastroparesis ? The only time I tried it I had watery mixed with formed stool.

Years ago I had severe cramping and diarrea suddenly for a few hr. and thought it was probably an allergic reaction to sulfites in seafood or salad bars, which are illegal to add now. Hope restraunts are following the law. Not sure that was the cause though.
Glad you are better.

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@juliew0205

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.

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Thank you for sharing @juliew0205! I get help from all the posts here!
(I do get my mayo Gastroparesis threads mixed up though. )

Someone somewhere posted something about the diet for Gastroparesis. I agree. Hard to follow if you also have type 2 diabetes where you need high fiber and low carbs. The Gastroparesis diet is low fiber and high carbs!

And other conditions complicate diet even further. Based on all of my “conditions” I need to be on a low fiber, low carb, low sodium, low fat, low acid eating plan! Lol! 😂 😂😂

It’s hell getting old y’all!

I think the eating plan for Gastroparesis is evolving though. The first guide I got last year showed oatmeal and lettuce on the forbidden list. But a new eating plan I got at my gastroenterologist ‘s office a month ago shows quick oats and iceberg lettuce are ok! Those 2 items opened up a whole new world for me!

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I’m new. I have Gastroparesis and horrible GERD. Diet is a huge issue and I shake nonstop.

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@downtowntiger

I’m new. I have Gastroparesis and horrible GERD. Diet is a huge issue and I shake nonstop.

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I have gastroparesis too but all the reading I've been doing hasn't mentioned shaking. Do you have diabetes or hypoglycemia or parkinsons disease?
I am trying to find foods I don't have to cook that don't make my severe belching and stomach sloshing and gurgling sounds worse. I am not willing to cook, though I may be forced to later. I have been living on the custard out of Publix's bakery egg custard pie, saltine crackers usually without the salt as I eat them a lot, baked potatoes with greek yogurt - plain, Outshine popsicles strawberries with milk and cream, and their fruit juice strawberry and rasberry popsicles also. I can eat the trout at Cracker Barrel without any spices but I get lemon wedges and use the juice to improve flavor and the macaronni and cheese and baked sweet potatoes. If I was cooking I would make vegetable soup with few things cooked very done then gradually add one ingredient for a batch and see how react. Canned soup I tried increased belching. I also drink 3 vanilla Ensures a day to get some nutrition and protein. I have not yet consulted nutritionist or much of anyone as I don't like the write ups on the gastro dr. in my small/med size town, and have just read a lot hunting a dr. to travel to. I was very worried about the diet/nutrition until I just got a new problem in past 6 wk - blood in stools. I have appointment in 2 wk with surgeon to do endoscopy and colonoscopy. I am worried about whether I can get the required 4 liter drink down in 1 day, even increasing the number of hours by about 6 hr or so. I will also do clear liquids the day before the prep day to try and have as empty of stomach and colon as possible. Either my self designed diet or the blood problem, whatever it is, has made me have more frequent movements so that will help also. So hopefully I can do this. I have to. My biggest fear now is that i might have colon cancer. I am trying to quit reading on health and news - (except Rachel Maddow,) and listen to more music and get some things done that I am extremely behind on.

Anyone have any food items to add that can be purchased not made?

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@juliew0205

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.

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Hope you are still doing better. How long is the balloon stretch likely to help? I haven't run across that technique in my reading. Cleveland Clinic's Motility Clinic has a lot of articles as well as some research from Mayo I found through various searches and Pubmed.gov site- google for exact address, if want to read journal articles. Cleveland Clinic writes about a surgery technique where they cut just above pyloric valve. They use that if diet and meds aren't sufficient.
Unless you can find some way to control pain without opiates you will possibly not be able to get much better, as that may be the cause. Anticolenergic meds need to be decreased/eliminated when possible is what I gather from readings. I have taken a lot over adult life and take a medium amount of antihistimines, asthma and anxiety and depression meds now. I am not sure I can take less. Will be trying.

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@mayorocks

Hope you are still doing better. How long is the balloon stretch likely to help? I haven't run across that technique in my reading. Cleveland Clinic's Motility Clinic has a lot of articles as well as some research from Mayo I found through various searches and Pubmed.gov site- google for exact address, if want to read journal articles. Cleveland Clinic writes about a surgery technique where they cut just above pyloric valve. They use that if diet and meds aren't sufficient.
Unless you can find some way to control pain without opiates you will possibly not be able to get much better, as that may be the cause. Anticolenergic meds need to be decreased/eliminated when possible is what I gather from readings. I have taken a lot over adult life and take a medium amount of antihistimines, asthma and anxiety and depression meds now. I am not sure I can take less. Will be trying.

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I have been on antidepressants and allergy meds forever due to chemical imbalances. I needed opioids for a short period of time, but no longer take them. I am about to go to the Mayo Clinic. Hugs to you guys!

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@mayorocks

I have gastroparesis too but all the reading I've been doing hasn't mentioned shaking. Do you have diabetes or hypoglycemia or parkinsons disease?
I am trying to find foods I don't have to cook that don't make my severe belching and stomach sloshing and gurgling sounds worse. I am not willing to cook, though I may be forced to later. I have been living on the custard out of Publix's bakery egg custard pie, saltine crackers usually without the salt as I eat them a lot, baked potatoes with greek yogurt - plain, Outshine popsicles strawberries with milk and cream, and their fruit juice strawberry and rasberry popsicles also. I can eat the trout at Cracker Barrel without any spices but I get lemon wedges and use the juice to improve flavor and the macaronni and cheese and baked sweet potatoes. If I was cooking I would make vegetable soup with few things cooked very done then gradually add one ingredient for a batch and see how react. Canned soup I tried increased belching. I also drink 3 vanilla Ensures a day to get some nutrition and protein. I have not yet consulted nutritionist or much of anyone as I don't like the write ups on the gastro dr. in my small/med size town, and have just read a lot hunting a dr. to travel to. I was very worried about the diet/nutrition until I just got a new problem in past 6 wk - blood in stools. I have appointment in 2 wk with surgeon to do endoscopy and colonoscopy. I am worried about whether I can get the required 4 liter drink down in 1 day, even increasing the number of hours by about 6 hr or so. I will also do clear liquids the day before the prep day to try and have as empty of stomach and colon as possible. Either my self designed diet or the blood problem, whatever it is, has made me have more frequent movements so that will help also. So hopefully I can do this. I have to. My biggest fear now is that i might have colon cancer. I am trying to quit reading on health and news - (except Rachel Maddow,) and listen to more music and get some things done that I am extremely behind on.

Anyone have any food items to add that can be purchased not made?

Jump to this post

Progresso low sodium chicken noodle soup works. I don’t listen to news at all. I pray a lot. I am so sorry any of us are going through this.

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