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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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Don’t stop there. My brother had pancreatitis and was hospitalized for 3 days. Then three yes later had severe pain in stomach through to his back. I kept telling him to go to the ER until they find what was wrong. He had pancreatic cancer. He died 15 months later at the age of 59. The only blood test that indicates cancer activity is the pancreases is the CA9-19 test
I have stomach pain through to back no one will listen to me how do I get this test ca9-19
@donnak142 Donna, I am so sorry to hear about your brother. Pancreatic cancer is such a tough one, and I have heard that it's because it does not generally get diagnosed for a long time. The husband in a couple of dear friends is battling that now, in fact I drove him to his chemo yesterday. I hope and pray he will survive this.
JK
I read an article about "functional medicine". There is such a thing. This person had to have a tube inserted in her stomach. She was that bad. And she had pictures of herself so thin and tired. Now. She claims she is has no issues. She went to a Functional Medicine Clinic. She ended up helping her diet (which I assume you have been avoiding the foods you are not to eat) with adzuki red bean paste which add protein and beet kvass. She also said that sometimes you can be misdiagnosed and have hypochloridia. Don't know if functional medicine is a choice but it might be worth a shot. Does Mayo Clinic have a functional medicine department? I have this disease and did not take the medicines. My gastroparesis said to try iberogast. It is natural drops that go into a trip before or during your meals. It helps the motility of your stomach and it works for me. When I have the coughing fits, I resort to sugarless gum. Works great! I also have a 5-7" wedge until my mattress to elevate my heads and I sleep in my left side as the right side is a straight shot to your stomach & you can get reflux. I do exercise twice a week too. And avoid ALL of the foods that they listed.
I think you should be able to ask your primary care doctor to do the blood test.
I am in so very much pain. Was diagnosed with gastroparesis. Has anyone been diagnosed as having this and have you found it painful
Hi @susanpsg and welcome to Connect. You may have noticed I moved your post to this existing discussion on gastroparesis so that you can meet others who may have similar discussion. Simply click VIEW & REPLY to find your post and read what others have said about their lives with gastroparesis.
I also wanted to introduce you to fellow Connect members, @suemer, @ktracyf and @donnak142 as they have experience with gastroparesis and may be able to offer you support and share their experiences.
Back to you @susanpsg how has your doctor suggested you be treated at this time? Is there anything you can do to lessen the pain at this time?
The G. I. Docs there are the best in the world. They are very knowledgeable, efficient and .kind. Be prepared, possibly, for lots of testing. I found their fees and tests cheaper than local ones. They are salaried, or were when I had my visits (2).
I'm sorry for the delay as I wasn't feeling well the past several days. Thank you so much for your opinion and advice on the GI doctors at Mayo. I called them last week and got established and a doctor has requested my medical charts to be faxed over. I was happy that they started the process so quickly and hope to get set up with an appointment as soon as possible. Thank you again!
@sickirishlass
If you use the search option up above this post.. looks like a magnifying glass, and type in gastroparesis you will find many with this condition. Dietary tips are throughout those post. Every person is different. It is recommended to have a lower fiber diet. I find for me.. being I also have diverticulosis throughout my colon, which requires a high fiber diet.. that I have to hit a medium. I avoid veggies and fruits that are very fibrous. I will eat broccoli flowerets well cooked and avoid the stems that are fibrous. I love asparagus and eat it much like broccoli.. making sure I avoid the fibrous stem. Most veggies I just cook Southern Style.. cooked to death.. looks like baby food if smashed with a fork. Summer squash I peel, cut in half and scoop the seeds out with a spoon. I avoid stringy green beans, black-eyed peas field peas and greens like kale, lettuce, collard and mustard greens. For some reason I can eat the creamed spinach my husband cooks. I can eat Bush's canned baked beans, but no other brand.
I also have achalasia and Barrett's esophagus... swallowing problems and food feels like it gets stuck with plenty of chest pain. Only fruits I eat raw are very ripe bananas and satsumas (a type of tangerine.I cut the fruit in half and run knife around the edges and between the sections and scoop out the sections leaving the fibrous parts behind.) I eat canned fruit and I cook apple slices without the peal. I can sometimes eat homemade granola bars.... a few finely chopped roasted nuts, finely chopped dried fruits with local honey and brown sugar mixed with toasted oatmeal. Sometimes I eat a few roasted pecans or peanuts .. chewing well.
Only cracker I can eat is Ritz. Bread is hit and miss. So I eat very little bread. I eat very little white potatoes. Even mashed they are difficult to swallow. I do better with sweet potatoes, but not by much.
Meat... ground beef is my best bet. Chicken is most difficult for me. Sometimes I puree up some pouch tuna fish with a bit of mayo and eat with crackers. I have eaten so many eggs I cannot stand them anymore.
Mostly a diet is trial and error. What works for one may not work for another.
Best of luck,
Zaroga
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