Gastroparesis - Problem w/Fluid Emptying Only - Need help with rare symptom / diagnosis

Howard

Howard

suffering ceases when craving is removed
Messages
1,334
Location
Arizona
Judee said:
Hope you are doing okay, @Howard. Please let us know when you are able to. Don't stress. Just wanted to let you know we're thinking about you.
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I'm doing okay. I am mostly posting on the J Tube thread (exciting stuff! :)) since I haven't specifically tackled the gastroparesis issue as of yet.

I made it up to 1400 calories in food and 500ml of water through the tube on Sunday, but I was probably pushing it a little bit too hard.

But either way, I am staying hydrated enough, and my food intake is helping me maintain my current weight, not losing any additional pounds at present. :)

Actually, I am trying to ratchet up on the ginger powder a bit more, instigate some stomach contractions and perhaps some additional gastric emptying, but I'm not sure if it's working.

Thank you for asking!
 
Zebra

Zebra

Senior Member
Messages
1,000
Location
Northern California
Howard said:
I've been in the hospital for the past week, undergoing a multitude of tests. They confirmed that I do have gastroparesis, however, the gastric emptying study indicated food does exit my stomach in a reasonable amount of time, while fluid just sits there, not emptying as it should.

The contrast CT scan also confirmed that my stomach is enlarged and full of fluid... while the upper endoscopy confirmed a slight hiatal hernia.

I am currently hospitalized because I am 6 ft tall and weigh 87 lbs, and at the time I was admitted I could not eat or drink at all, due to recent onset of dysphasia (swallowing difficulties). Last week they stretched my esophagus, hoping to resolve that part of the issue. And it hasn't really helped much, if it all.

The gastroparesis symptoms began mid-January, with the stomach filling up, and then fluids backing up through the esophagus.

At this point, the gastroenterologist(s) and neurologist have been unable to identify a case similar to mine, wherein food is digested and passes into the intestines in a timely fashion, and fluids do not.

I am trying to get the medical staff to run a nutritional blood panel, something to determine if I'm lacking in one area or another, but so far they've been unwilling to do so.

Low Vitamin D is at the top of the list of possibilities, also ferritin and the various B vitamins. Each of which has ties to gastroparesis.

https://rarediseases.org/rare-diseases/gastroparesis/

Right now, a feeding tube or a J-Tube are the options on the table, unless they can determine what's causing the issue.

I am so far I'm willing to take any of the gastroparesis medications, based on reports that they have horrendous side effects.


Does anybody have any suggestions? Any similar experiences? Anything I can reference, or presented to the medical staff?

These doctors do seem very willing to help me, they just don't know what to do next.


Thank you for any help you can provide. :)
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Hi, Howard. I wish I had seen your post while you were still in the hospital. I was in the hospital 5 years ago with very similar upper GI dysmotility symptoms and underwent similar in-hospital testing.

I was misdiagnosed/mistreated for over one year before being referred to one of the top neurogastroenterigists in the country. And I suspect you also need to be seen and re-evaluated by this niche specialist, maybe via an online appt?

I am glad to hear that you are doing "ok" at home, but if you are like me, I'm guessing you'd like a definitive diagnosis and treatment plan.

I am not savvy about the tech functions on this site, but I'm wondering if you would like to direct message/personal message.

I am in the midst of a terrible flair, including viral meningitis, so I cannot keep up with your thread.

Pls contact me if you like. I'll check this site again tomorrow.

Best wishes,
Zebra
 
Howard

Howard

suffering ceases when craving is removed
Messages
1,334
Location
Arizona
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