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

having problems with chronic constipation , i was seen at Mayo clinic in Scottsdale and found to have Gastroparesis . i was told to eat small meals 4 to 5 times day . i take swiss kris tablets 4 every night with some Magnesium , i some times have a large bowel movement and some times i don't , which results in pain in my abdomen down in to my testicles with bloating and pain

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Hi @tpickard, you may have noticed I moved your post to this existing discussion on Gastroparesis so that you can connect with others who have similar experience. Simply click VIEW & REPLY in your email notification to get to your post.

I'd like to thank @tigreyes2004 for responding to your post and also introduce you to @pdilly and @beanglow

How long have you been taking the swiss kris tablets and magnesium?

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I may have said this before but it continues to amaze me how differently Gastroparesis affects each of us. I am fortunate to have a more moderate case of Gastroparesis than most of you.

But I did go thru a period of time when I went back and forth between constipation and diarrhea. Yuck! The 10mg domperidone twice a day helped me with no side affects. But my doc had me taking miralax twice a day for the constipation and it was just too much and caused diarrhea. He changed it to once a day in combination with colace twice a day. Still too much.

I think you just have to figure out what’s right for you yourself. I have been taking 2 colace a day for months. I mark my calendar at bedtime each night with a check mark or an X indicating whether I did or did not have a bowel movement that day. If I don’t go for 3 straight days, I take miralax the next day. That’s what works for me.

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@pdilly

I may have said this before but it continues to amaze me how differently Gastroparesis affects each of us. I am fortunate to have a more moderate case of Gastroparesis than most of you.

But I did go thru a period of time when I went back and forth between constipation and diarrhea. Yuck! The 10mg domperidone twice a day helped me with no side affects. But my doc had me taking miralax twice a day for the constipation and it was just too much and caused diarrhea. He changed it to once a day in combination with colace twice a day. Still too much.

I think you just have to figure out what’s right for you yourself. I have been taking 2 colace a day for months. I mark my calendar at bedtime each night with a check mark or an X indicating whether I did or did not have a bowel movement that day. If I don’t go for 3 straight days, I take miralax the next day. That’s what works for me.

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@pdilly This is exactly like when I had cirrhosis and the accompany HE (hepatic encephalopathy episodes, which are periods of extreme confusion). One of the prescribed medications to prevent HE is lactulose. I was told it is one of the few drugs that each patient has to titrate themselves, figuring out the dose that works for you and adjusting depending on the day. It's good that you are on the right path to knowing what works for you. It can be a balancing act.
JK

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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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I had a Nissen in 2015.. in Iowa… then 2 months later went to Mayo MN to find out what had been done to me… Post operative Gastroparesis…My radiologist friend in Sweden diagnosed it as well just from my description… Yes it completely changes your life.. But I lost 50 pounds as I arrived at Mayo… now I am back 25-30 pounds better.. 5'-10" 175 pounds.. I have to keep eating each time I pass through the kitchen… I live alone so at least no one else has to deal with it… I used to enjoy cooking out… going out to eat.. drinking wine… Not so much… but I find things on menus that I can live with… usually taking "boxes" of even appetizer servings home to finish off later … the big problem is to let Gravity work too… don't lie down for at least 2 hours after eating…Propped up sleeping is essential as well… I avoid Broccoli, cabbage and such that is not easily digested… but stomach gases and bloating is a problem.. but I have used Papaya Enzyme pills to help with that … carry them with you… I do take Gas-X as well … Just 1 a day … not all the time … but the method and rate you use to eat… very slowly… cut things up very finely 1/4" by 1/4".. … chew very well… coping is essential.. so Mayo MN prescribed Mirtazapine… the Doctor said it would help me think that I wanted to eat… as I actually feel best when I first get up … stomach empty… Ken

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@sebley12

I have Multiple Sclerosis and because of muscle weakness I was also diagnosed with GP. I had recently had a Laproscopic Pyelormyotomy and am now doing fine. I also have a lot of other Autoimmune diseases as well such as Lupus and Sacoidosis and more. Autoimmune diseases can cause all kinds of Gastrointestinal problems so be sure to get your ANA blood checked for any kind of Autoimmune activity that your Doctor may be un aware of. I also had the Nissen Fundolpcation as well. Best wishes to all!!

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Boy Kimberly you have been rung through the ringer. I hope you are doing much better. I would like to ask about the LUPUS part, how did they finally 100 percent diagnose you with LUPUS and did it take a while. I have many symptoms of LUPUS but problem these systems are same for many other diseases. New doc told me my blood work showed flags for LUPUS and the arthritic doctor I see have not diagnosed that. One of the most tell tell signs for me is that I have the butterfly type rash across my nose it is very small and very light but it is there.

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@ken82 thank you for sharing your story. I had my Nissen in 2015 too. I don’t think it caused my mild Gastroparesis but I’m not not positive. What were your symptoms in those 2 months after the procedure? How did you know something was wrong? How did mayo diagnose Gastroparesis?

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@pdilly

@ken82 thank you for sharing your story. I had my Nissen in 2015 too. I don’t think it caused my mild Gastroparesis but I’m not not positive. What were your symptoms in those 2 months after the procedure? How did you know something was wrong? How did mayo diagnose Gastroparesis?

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During the 2months prior I was hospitalized 10 days, had a couple Endoscopies with dialation. Every week some x-rays or them having me swallow chalky stuff with some pill. When the GI doctor told me to get an non FDA drug in Canada.. I bolted to Mayo MN.. there I had 3 testa..the emptying time.. about 3 hours.. but GI doc said I had post operative Gastropaneisis…that 1 in 6 Nissens go bad…ken

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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?

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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"

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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!

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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.

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