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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I have abdominal adhesions from multiple surgeries and have serious pain and digestive problems along with intermittent numbness in my arms and face, random intermittent double vision, digestive issues like gastroparesis and constipation….random blood pressure spikes and drops with or without palpitations…bloating…the symptoms go on…range of motion in my torso has been narrowing over time as I feel like I am slowly being strangled to death on the inside! Bending to tie my shoes causes something to pull and spasm and the pain is excruciating!
Sounds exactly like me! Thank you for posting your message…I am still searching for answers!!!

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I have been taking Domperidone for years for slow emptying of the stomach. It’s almost like a miracle drug for me. Corrects my symptoms almost totally. Without it it I have terrible stomach aches, nausea, bloating. With it all those nasty symptoms disappear and I can eat what I want, amount within reason, and feel as though I have no problem at all. I also take Previcid to control acid and Sucrafate to line the esophagus but from experience I can say that the keys to the kingdom, so to speak, is the Domperidone..

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@brendaharvey

I was diagnosed with Gastroparesis about 2 years ago.
I have stuck to a diet given to me by a dietitian.
Gastroparesis is not a static disease so sometimes what I eat puts me in bed for a few days and then I can eat the very same foods and feel great!
I lost 30 pound in 2019 and have only gained 4 pounds back.
My constipation is not bad since I began using this formula before bed. 2 tablespoons.
I cup oat brand
1 cup applesauce
3/4 cup prune juice.
I mix in a Tupperware bowl and keep refrigerated and take 2 tbsp before bed along with a small amount of Milk of Magnesium Saline.
Although I have bowel movements somedays I cramp all day.
I eat no raw veggies or fruits, no meat other than boiled, baked or grilled chicken or fish ( no skin ever)! However sometimes I still cramp all day!!!
I am looking into a procedure where the pyloric valve is widened to let foods pass easier.
We will see if this works. I get lots of exercise except on sick days.

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I hope this might help you.

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@brendaharvey

Has anyone had a surgical procedure for opening the pyloric
valve to help food pass more adequately?

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@brendaharvey, I have heard about this procedure but my understanding is that it is only done at Johns Hopkins and perhaps a few other hospitals and Medicare does not cover it. I live on a fixed social security income and physically cannot travel. 🙁

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@kamama94

@brendaharvey, I have heard about this procedure but my understanding is that it is only done at Johns Hopkins and perhaps a few other hospitals and Medicare does not cover it. I live on a fixed social security income and physically cannot travel. 🙁

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I had made an appointment at Johns Hopkins for Oct 11 but hated to travel so far. I am in Kentucky. I have Medicare and Cigna and they approved my insurance.
When I see this surgeon in Louisville, Ky and see the video and it is the surgery that I want, I will cancel the Johns Hopkins.
Louisville is just 100 miles from me.

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@kamama94

@brendaharvey, I have heard about this procedure but my understanding is that it is only done at Johns Hopkins and perhaps a few other hospitals and Medicare does not cover it. I live on a fixed social security income and physically cannot travel. 🙁

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I am so sorry.❤️🙏🏻

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Help wanted: I have made these several times and have found them easy on my GI system but would like to know if others will try them and if you like them/hate them/tweak them, etc. TIA!

Carrot soup 72.8 cal 1+mg P 270.4 mg K 40.5 mg Na <1.7 prtn <17.5 crb 1.1 fbr 0.3 ft
1 tub Gerber carr 40 cal ?mg P 230 mg K 40 mg Na <1 prtn 9 crb 1 fbr 0 ft
1 Tbsp mandarin ornge bits+1 Tbsp jce 20 cal ?mg P 23.7 mg K 0 Na 0.2 prtn <4.8 crb 0
fbr 0 ft
<1 tsp mpl sugar 10.6 cal 0 P 8.1 mg K 0.3 mg Na 0 prtn 2.7 crb 0 fbr 0 ft
<1/8 tsp ginger <2.2 cal 1 mg P <8.6 mg K <0.2 mg Na <0.6 prtn <1 crb <0.1 fbr <0.3 ft
I add a pinch of Nu-Salt to this and do not take a ginger capsule when I have it for a meal.

Pea soup 54.5 cal 5.2+mg P 59.52 mg K 5.76 mg Na 2.17 prtn 8.03 crb 2.9 fbr 0 ft
1 tub Grbr peas 50 cal ?mg P 45 mg K 5 mg Na 2 prtn 7 crb 2 fbr 0 ft
¼ tsp onion pwdr 1.95 cal 1.95 P 5.3 mg K 0.3 mg Na 0.05 prtn 0.47 crb 0.09 fbr 0 ft
¼ tsp grlic pwdr 2.57 cal 3.2 mg P 9.22 mg K 0.46 mg Na 0.12 prtn 0.56 crb 0.067 fbr 0 ft
Mix, thin with water or broth if desired. As a vegetarian on a renal diet I sometimes add thin slices of a vegan "hot dog" for the protein and to mimic regular pea soup made with ham bits but this isn't necessary. Since for some reason I tend to run low on potassium (unusual for a kidney patient) I usually add a pinch of Nu-Salt to this but you could use regular salt if desired.

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@brendaharvey

I was diagnosed with Gastroparesis about 2 years ago.
I have stuck to a diet given to me by a dietitian.
Gastroparesis is not a static disease so sometimes what I eat puts me in bed for a few days and then I can eat the very same foods and feel great!
I lost 30 pound in 2019 and have only gained 4 pounds back.
My constipation is not bad since I began using this formula before bed. 2 tablespoons.
I cup oat brand
1 cup applesauce
3/4 cup prune juice.
I mix in a Tupperware bowl and keep refrigerated and take 2 tbsp before bed along with a small amount of Milk of Magnesium Saline.
Although I have bowel movements somedays I cramp all day.
I eat no raw veggies or fruits, no meat other than boiled, baked or grilled chicken or fish ( no skin ever)! However sometimes I still cramp all day!!!
I am looking into a procedure where the pyloric valve is widened to let foods pass easier.
We will see if this works. I get lots of exercise except on sick days.

Jump to this post

Hi,
I, too, have been diagnosed with Gastroparesis. I am struggling to figure out my diet. I am wondering if you would be willing to share with me what you eat and how often you eat. It is really a strange diet to try to get used too.
For my constipation my doctor said I should use a capful of Miralax every morning with my coffee. It has worked very well for me and is easy to take with my coffee. I would also be happy to answer any questions you might have of me. Thanks for sharing your experience with this disease.
Sandy

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@sandphil

Hi,
I, too, have been diagnosed with Gastroparesis. I am struggling to figure out my diet. I am wondering if you would be willing to share with me what you eat and how often you eat. It is really a strange diet to try to get used too.
For my constipation my doctor said I should use a capful of Miralax every morning with my coffee. It has worked very well for me and is easy to take with my coffee. I would also be happy to answer any questions you might have of me. Thanks for sharing your experience with this disease.
Sandy

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I saw a dietitian and was given a suggested diet. I eat only soft foods and try to chew each long enough to form liquid before I swallow. However, I still have days, like this morning at 3a.m. when I wake up cramping. I take a gas pill and Tylenol and get up and walk around for a while.
No foods seem to always work.
Miralax did not work for me.
I use the recipe given to me by a physical therapist. Two tablespoons before bed along with a small amount of milk of magnesia saline.
I also do a massage of my stomach and intestines to move the food along.
I am going next week to consult with a surgeon on having the endoscopy procedure done to make the opening to my Pyloric valve made larger.
I lost 30 pounds right away 3 years ago and seem to only be able to gain back 4 to 6 pounds.
Today I weigh 104.6.

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@brendaharvey

I saw a dietitian and was given a suggested diet. I eat only soft foods and try to chew each long enough to form liquid before I swallow. However, I still have days, like this morning at 3a.m. when I wake up cramping. I take a gas pill and Tylenol and get up and walk around for a while.
No foods seem to always work.
Miralax did not work for me.
I use the recipe given to me by a physical therapist. Two tablespoons before bed along with a small amount of milk of magnesia saline.
I also do a massage of my stomach and intestines to move the food along.
I am going next week to consult with a surgeon on having the endoscopy procedure done to make the opening to my Pyloric valve made larger.
I lost 30 pounds right away 3 years ago and seem to only be able to gain back 4 to 6 pounds.
Today I weigh 104.6.

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Thanks so much for your reply. It sounds like we have pretty much the same diet but my nutritionist said I shouldn't have oatmeal (okay with me as I don't like it). I don't seem to ramp up like you do but often after I eat I feel nauseated and crampy. If I lay down and nap or just rest for an hour or two I seem to feel better. However, I tend to live with constant fear that I am eating something I shouldn't. Mine started after I had a surgery. I had a hiatal hernia and it pushed my stomach up into my chest cavity and it was resting on my lungs and I have COPD (and I never smoked) they thought it should be moved. I never felt good after that. That is when they found I had gastroparesis, a year after my surgery. I weighed 165 when I went in for surgery and I now weigh 122 and I seem to stay there. I guess I can be thankful I had those few extra pounds that I could afford to lose. It is so good to discuss this disease with someone that has it too. I know one lady that has it here in my home town and I know of another one that has it but have not talked to her. Thanks so much for your reply. By the way I am 77 years old.
Sandy

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