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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@bonez3861

I have severe gastroparesis and barrett's esophagus and chronic pancreatitis and severe malabsorption. I am on a feeding tube and pump fed into my small intestines. I take Zofran 8mg that dissolve on my tongue. I take it continually. Sibo is a monthly problem. I recently lost 15 pounds for no reason. I am struggling to gain weight but it won't happen. I'm 96 lbs and 5'5 my BMI is 16. It's horrible. I got this when I was 49. I'm now 63. I am not getting any answers from my gastroenterologist and I am finally going to Shands Hospital for another opinion. I have been to all 3 Mayo Clinics and one 3 time's. I need answers because this is awful. If I find anything helpful I will share. Hang in there 🙏

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The Mayo MN GI team is the best... While I have been in FL a lot.. I do not know of the reputation of the U of FL Shands hospital..a second opinion is always good.. but must be backed up with tests, data, and logic...

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@ken82

The Mayo MN GI team is the best... While I have been in FL a lot.. I do not know of the reputation of the U of FL Shands hospital..a second opinion is always good.. but must be backed up with tests, data, and logic...

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Thank you! Shands is one of the best in the world for pancreas transplants. Since my gastroenterologist here hasn't run any test's since I have had gastroparesis and chronic pancreatitis and I am so much worse I need someone who will do test's and procedures and explain why I am so much worse. My doctor gives me a celiac block every 2 months to my pancreas and does biopsies of my barrett's esophagus and esophagus. But I can't help but believe that my pancreatitis and gastroparesis and malabsorption and my thyroid and b12 are all connected to each other. I take b12 injection every week and thyroid medication daily. Now they found at Mayo in Jacksonville neurology that I have 2 types of neuropathy also. I need someone to be able to try to help me, not just keep giving me injections and tell me I'm at the end and done without even running some tests.

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@bonez3861 .. the most telling test in my case was to eaten the standardized breakfast meal that the provide with a nuke tracer in it.. then they x-ray you each hour to see the rate of emptying of the stomach... ..mine took nearly 3 hours... ..that test was at Mayo MN.. my local GI and surgeon did other tests for 2 months while I lost 50 pounds

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@bonez3861
Auto-correct did a job ... test was to eat the standardized breakfast meal they provide.. laced with a nuke tracer...

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@ken82

@bonez3861 .. the most telling test in my case was to eaten the standardized breakfast meal that the provide with a nuke tracer in it.. then they x-ray you each hour to see the rate of emptying of the stomach... ..mine took nearly 3 hours... ..that test was at Mayo MN.. my local GI and surgeon did other tests for 2 months while I lost 50 pounds

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I have had that and several other tests in the past. They put me on a feeding tube and pump 10 year's ago. I feed into my small intestine. But with this and my chronic pancreatitis I don't know what is causing my sudden weight loss of 15 pounds. I have been this way for 3 months now and my body has nothing left but skin and bones. I just hope that they figure out what changed. I am dangerously thin. Plus my intestines keep cramping and my nausea is non stop. Zofran barley helps at all. Thank you!

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I believe that I have, or believed that I had, gastroparasis, but despite that, my gastric empty test came back as negative, inconclusive...but this is what I learned, and what helped the most. First was electrolytes, one night drank some powdered mix and woke up the next morning, and drank some...primarilly potassium, because neurons need potassium and sodium, and we get plenty of sodium, but also magnesium, and my GI like woke up, giggling, gurgling, and within a very short time, my brain fog lifted, and then I sat on the can, and two little turds came out, I didn't know whether to laugh or cry, it had been so long, and later in the tub, little fart bubbles and I laughed like a little boy, things that had been frozen, constipated, stuck, started to move. Also, I have had some success with a tenz unit, sometimes the small of the back, both sides of my stomach, and tummy to small of the back, tenz either activates the vagus nerve, or frankly stimulates the muscles, but I suggest sstarting very low power, because if you have IBS, it can aggravate it and make the large bowel tie up in a tighter knot. Also hot tubs, hot to cold, and one other crazy thing that helped, was blue ice, held against my stomach, would shrink the bowels, and as they shrunk, that would push things down the track...any and all excercise, maybe the hardest, walking, water walking, even tai chi and yoga helps. One more, breathing, breah out, push your tummy in with fingers or arms, then breath in, expand your tummy, like make it bloat inhale, so that the bowels can expand, then exhale again, and make them squeeze, but also releax as much as possible, and that will sometimes get things to budge and move along, and have patience and faith, each budge, each move is progress. Another person in here, he does a lot with staying vertical, bed on a slant, and I also suggest if your body is in like a recliner chair, don't, stay vertical or at a slant, but don't have your tummy bent or crooked, if anything put a pillow under the small of your back, so that your bowels can stretch out, give them room. Criss cross that with child's pose from yoga, to expel the gas, then stretch out again...and stuff will move. do all of his, and cash bet, you'll have a fart, a gurgle, and a nice big poop, but make sure that you hydrate often and well. ..oops, one more, iron pills in like smalll dose 500 mg. and have them check your iron. Any and all labs, TSH, thyroid levels, but also if possible a CMP to check all them kinda electrolytes and see what's up. Good luck...

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@romans8

Hi everyone. It is really heartbreaking to hear how so many of you have suffered with gastroparesis with so little relief. I was just diagnosed with this condition after a nuclear gastro emptying solid test a month ago. I was told to follow the corresponding soft/liquid diet and was prescribed Motegrity, which I haven’t been able to get my insurance to cover. So I am at a loss as to how else to deal with this frustrating condition. My GI symptoms are pretty much the same as most of you have described ( without the vomiting). I am not diabetic, but do have severe neuropathy and had a thyroidectomy several years ago. I also have heart arrythmias, so that eliminated some medication suggestions.
I am wondering if any of you have tried Motegrity? Or Tens unit on the stomach?
Hope to hear from some of you.

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I have been taking senokot at night, then at 4 pm, cut off hours of no solid food.

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