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12:59am July 18, 2013

➸ stephernoodles: On a more personal note, my gastroparesis is definitely getting worse....

stephernoodle:

On a more personal note, my gastroparesis is definitely getting worse. I know I’m not just imagining it because the past week or so I have had the worst breakthrough acid reflux of my life. Even on the strongest dose of my PPI I have ever taken, I am still having stomach acid backing up into my…


Definitely get a new GI doc.

Rapid weight loss from malnutrition is always a problem. Even if you’re fat, you can burn muscle including heart muscle. That’s what they told me when I dropped from 240 to 200 in weeks.

Even if you’re not losing weight, 500 calories a day is never never ok. Never healthy.

Also you can starve to death before ever becoming thin.

Weight is not the measure of gastroparesis problems. At all. Also sometimes starvation can result in weight GAIN because of metabolic changes.

That is to say, any doc who measures gastroparesis symptoms by weight is dangerously stupid.

I am fat and I have severe enough gastroparesis to qualify for a feeding tube.

I had gastroparesis induced reflux too. It went into my lungs and choked me and I had pneumonia more often than not.

Plus I couldn’t eat more than one b
Boost a day at best.

Without the tube I could’ve been dead by now.

In my case they all acknowledged that, the fight was actually to convince them my life was worth saving. Not kidding. They tried to convince me to go home and die.

But gastroparesis can make you really ill or kill you uncontrolled. Anyone saying you should subsist on that little food a day is horrible.

My feeding tube has solved a lot of the problems with stomach acid buildup.

The j tube takes in food and meds. No more food adding to stomach clutter.

The g tube means I can ACTUALLY REMOVE BILE STRAIGHT FROM MY STOMACH INTO A CUP.

Which is like the most amazing invention ever. It also removes gas. Instant bloat removal.

I drain it into a cup whenever I feel too full while awake. Then I wear a suction drainage bag at night and it removes all the fluid so git won’t go in my lungs while I sleep.

That may not be the answer for you. But there got to be another answer besides the shitty care you’re getting because that ain’t right.

You might have to fight. But remember you are fighting for your survival. Which is worth it. You don’t have to lay down and take it.

But if you do fight of course be prepared. Try to bring as trusted person with you to appointments who can back you up. Even someone just sitting there observing they know they are being watched. Better yet someone who speaks up for you when you can’t.

Fighting the system can be tough but dying is tougher. That’s what I eventually realized.

Also sometimes it takes lots of meds. I’m on a PPI, Reglan, six other nausea meds. Plus the feeding tube.