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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pdilly | @pdilly | Sep 18, 2019

Thank you for your reply @ken82 — so did you start having problems immediately after your Nissen fundiplication? Is that why the mayo dox diagnosed it as “post operative” Gastroparesis?

ken82 | @ken82 | Sep 19, 2019

I had so much trouble immediately after the Nissen... what was supposed to be 1 or 2 nights in the hosp. turned into 9... that was in Iowa... My Mayo MN doctor told me 1 of every 6 Nissens go bad... NOT Good... The Iowa based Clinic does not work like Mayo ... to their detriment... Mayo' s cooperation is so wonderful... Yes, the operation caused the damaging of some nerves around the stomach.. that is why Mayo called my condition as "post operative"

pdilly | @pdilly | Sep 20, 2019

Thank you @ken82 — that helps me. I was diagnosed with Gastroparesis about 2 years after my nissen when they found a monster (a clump of undigested food) in my stomach during an EGD!
So now I know it wasnt caused by my Nissen. That’s important to me since I’m having another Nissen next Tuesday!

ken82 | @ken82 | Sep 20, 2019

The first Nissen procedure could have damaged that hairnet like system of nerves that pulse to empty the stomach.. the surgeon who did my first Nissen said it could be undone...but Mayo GI said that would make my condition worse... good luck.. you're a brave soul.

pdilly | @pdilly | Sep 20, 2019

But wouldn’t I have had immediate problems if that was the case?

My Nissen came undone all by itself. That’s why I’m having to have another Nissen. The surgeon who is doing the ablations on my Barrett’s said he can’t really do anymore until I get the Nissen redone.

ken82 | @ken82 | Sep 20, 2019

I was an architect and Univ. professor... obviously I have no medical training... but there was something that stopped your food passage... Those Nissens slip or drop out of place... The Mayo GI diagnosed my condition in a couple hours... 3 tests... You should ask your GI and surgeon... When they do this stuff laparoscopically.. it takes hours of them there on your chest/ abdomen... What do they say happened to where they put the stomach in your original surgery...?

ken82 | @ken82 | Sep 20, 2019

The way they explained my condition.. is that the stomach is positioned so those hairnet network of nerves can pulse to move the food out.. During the Nissen they move the things around... with these instruments... I have never seen a diagram of how the stomach is positioned now... but my Mayo GI doctor ...said that if it was undone that would be worse than it is now... so perhaps yours undid itself... and the food was trapped... I should have asked more questions before my Nissen... but I believed the Drs... GI , Surgeon, Primary Care Physician....

pdilly | @pdilly | Sep 20, 2019

Ok @ken82 — you’ve given me lots to think about in the next 3 days before my scheduled surgery! Like do I want to go thru with it!!!

My GI doc thinks the Gastroparesis developed because I have type 2 diabetes which can damage nerves. Who knows.

ken82 | @ken82 | Sep 22, 2019

In reply to @pdilly "Ok @ken82 — you’ve given me lots to think about in the next 3 days before..." + (show)

Did you get a second opinion from some reputable GI NOT connected with the surgeon?

pdilly | @pdilly | Sep 27, 2019

I actually got 2nd and 3rd opinions. My situation was that the surgeon who is doing the ablations for the low grade dysplasia of my Barrett’s esophagus said he couldn’t do anymore until the Nissen was done again because of all the stuff coming up into my esophagus.

So I had the Nissen done 2 days ago — and had my gall bladder removed at the same time. So far, so good!