1. < Digestive Health

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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beanglow | @beanglow | Jun 19, 2019
In reply to @fourof5zs "I go to the Mayo Clinic in Jacksonville. I initially went there for surgery... I had..." + (show)
@fourof5zs

I go to the Mayo Clinic in Jacksonville. I initially went there for surgery... I had 3 there. I think first surgeon was a Dr Smith, but he left and then Dr Bowers did the last two.. gastric bypass to fix a stubborn paraesophageal hiatal hernia. I had complications from that surgery (just my body and not surgeon's fault) and the last surgery in 2015 had to be an open surgery to repair the damage from the complications. It was Dr Smith that had me see one of the gi drs there that prescribed the med for gastroparesis cannot remember his name. It was to rule out if the gastroparesis was causing my pain and weight loss. The problem was where a surgeon in my hometown had placed mesh to fix the hernia. I now see a NP, Lois Hemminger who is under the guidance of Dr Dawn Francis.

I had the feeding tube in what they call the remnant stomach. In gastric bypass the stomach is divided... the other portion where real food goes is called a pouch. It is about the size of an extra large egg. So I can only eat about a cup of food at a time. Because the sphincter does not work correctly all the time the food can stack up into my esophagus. That is one reason I may have to go to a feeding tube again. There are a couple of surgeries that can help.. but things will have to get worse before they are considered.

Zaroga

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Wow! You have gone through so much. I had colon cancer in 2001. I had chemo and radiation at the same time and then had surgery. I had an ileostomy for 3 months and had it reversed. I was diagnosed with radiation enteritis which they think caused the chronic intestinal pseudo-obstruction disorder or they said it could have been caused by my Sjogren's syndrome. I hope that everything goes well for you and you don't have to have any more surgeries. Elaine

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tigreyes2004 | @tigreyes2004 | Sep 14, 2019
In reply to @tpickard "having problems with chronic constipation , i was seen at Mayo clinic in Scottsdale and found..." + (show)
@tpickard

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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I have it too. I also was seen at the Scottsdale Mayo. I get constipation & diarrhea. I was told that is when your stomach digests slowly. Right now I am not doing anything for it. I was told to take milk of magnesia or Mira Lax.

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tpickard | @tpickard | Sep 14, 2019

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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1 reply
Ethan McConkey, Moderator | @ethanmcconkey | Sep 14, 2019

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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pdilly | @pdilly | Sep 14, 2019

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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1 reply
JK | @contentandwell | Sep 15, 2019
In reply to @pdilly "I may have said this before but it continues to amaze me how differently Gastroparesis affects..." + (show)
@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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ken82 | @ken82 | Sep 17, 2019
In reply to @lawl "Only you guys understand how I'm feeling. I get so bloated it's unreal. When I'm severely..." + (show)
@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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barb2025 | @barb2025 | Sep 17, 2019
In reply to @sebley12 "I have Multiple Sclerosis and because of muscle weakness I was also diagnosed with GP. I..." + (show)
@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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pdilly | @pdilly | Sep 17, 2019

@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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1 reply
ken82 | @ken82 | Sep 18, 2019
In reply to @pdilly "@ken82 thank you for sharing your story. I had my Nissen in 2015 too. I don’t..." + (show)
@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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