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paarak
@paarak

Posts: 7
Joined: Jul 17, 2011

Gastroparesis

Posted by @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

REPLY

@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/

@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.

@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.

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

@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.

@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.

@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

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

@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

@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

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.

@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!

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.

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

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