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Gastroparesis with severe symptoms!
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 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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1 ReactionI am so sorry.❤️🙏🏻
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.
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
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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2 ReactionsThanks 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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1 ReactionYou are 2 years younger than I am.
I have found that normally if I don’t eat anything at all for 2 hours before I go to bed I do better.
I have not any other abdominal surgeries. I did have a hysterectomy after my second child. I had more than 20-fibroid tumors of multiple sizes. None were malignant.
I have not been told this, however, I do take a fall on carpeted steps coming down to my den. I was carrying too much to hold the rail or to really see over that very well.
I hit precisely on my bottom and this started a few month later. I truly think I injured my Vagus nerve when I did this.
I just seem to get weaker as time goes by.
I am so hopeful that this surgical procedure will work.
My daughter and I had been traveling quite a bit until I got this Gastroparesis, so she is now in Greece without me.
I probably will never be able to travel again.
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2 ReactionsThanks. I hope you find help.
Gastroparesis is a really life altering disease. Can I let you know what I find after I see Gastroenterologist in Louisville? My home GP looked him up today and he has had more than 20 articles published concerning this.
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2 ReactionsBy all means, I would really like to know what you learn there. When do you go? WI would also be interested in reading any of his articles. This is most definitely a life changing disease. Still trying to get a handle o it. Thanks so much for offering to do this.
God Bless,
Sandy
Hi. I so sympathize with you and am experiencing the same. Trips to ER. Heart rate spiking. I have AFIB and Aflutter. Had ablation 3 years ago. I’ve had my esophagus stretched 3 years ago. Episodes come and go in the past but now they seem be daily. I have appointment with Gastroenterologist Oct 4. Food is definitely a trigger, meat so hard to digest and swallow. Interesting about muscle relaxers helping. I was given GI cocktail (lidocaine & malox) it works temporarily. I hope we all find solutions and share the information we are given. I’ve lost weight, now eat very little. Thank you for sharing.
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