Gastroparesis

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

@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!

@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.

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.

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

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.

@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

@tujaded

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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Hi @tujaded and @ktracyf,

I moved @hgarm’s message to this very thread about gastroparesis (https://connect.mayoclinic.org/discussion/gastroparesis/); so you are in the correct discussion/thread. Here are a few other discussions on Connect that might also interest you:
– Gastroparesis Diet Guidelines https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed/gastroparesis-diet-guidelines-1/
– following gastroparesis diet while managing constipation https://connect.mayoclinic.org/discussion/following-gastroparesis-diet-while-managing-constipation/
– mild gastroparesis with severe symptoms! https://connect.mayoclinic.org/discussion/please-read-mild-gastroparesis-with-severe-symptoms/

Liked by pdilly

@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

@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

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

@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

@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?

@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

@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

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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