as small as a world and as large as alone

9:57pm July 6, 2013

pillsandpebbles:

So what happens to people with Gastroparesis who’ve exhausted all possibilities in terms of medication?

Depends on what’s going on.

In my case no single med worked, so they put me on six of them, and only when they added the final one, Marinol, did everything work. But they only work when I combine them, not on their own.

(Phenergan, Reglan, Zofran, Benadryl, Ativan, Marinol. All together.)

There’s also diet modifications. This isn’t an “alternative” treatment (which I’d steer away frYMMV). There are various levels of intensity to the modifications. There’s just eating less fiber and fat. There’s going to liquid diets like Ensure. There’s things like Ensure that are an even clearer liquid.

There is a stomach pacemaker that is in the experimental stages but had been granted a humanitarian exemption by the FDA so people can get it.

There’s feeding tubes. Generally what you’ll want is something that bypasses the stomach.

NJ tubes go up your nose, through your stomach, into your jejunum.

J tubes go straight into the jejunum through your side.

GJ tubes have two ends. One goes into your stomach, the other into your jejunum.

With a GJ tube you can put food and meds in through the J tube. And then use the G tube to drain the contents of your stomach. Draining through the G tube can help avoid nausea (from fluid building up in your stomach), reflux, and aspirated reflux and the infections that go with that. (Depending on how much fluid you produce, you can either drain it by hand, or get a drainage bag that attaches to the end of the tube and catches the fluid.)

There are also surgical options in extreme cases such as removing part or all of the stomach.

In my case I’m on six different meds, which was the minimum I could use to get home from a five week hospital stay last year.

I was on a liquid diet for awhile but my GP got worse, and now I’m on a GJ tube. It’s helping both with eating, and with avoiding aspiration pneumonia.

A lot of people don’t like their tubes but I love mine. Despite some complications, it saved my life, and eating this way after a grueling adjustment period was so much easier than getting sick all the time.
I’m still quite nauseated but it’s nothing like what it was when I ate.And if too much fluid or gas bloated my stomach I can just open up my g tube and release it.

I can still put food in my mouth for the taste if I’m careful. But I don’t miss eating as much as I expected. Eating was so hard at the end that the tube was a relief.

I wear a drainage bag while I sleep to prevent aspiration. It’s a bit of a pain but not too bad. Better than waking up coughing bile out of my lungs and getting pneumonia every few weeks and possibly dying.

GJ tubes have a high rate of clogging and other complications, but they are also tailor made for the problems people with GP face and for me it is worth it. 

You can go to the g-pact website to read about some of the surgical options but those are true last resorts for very severe cases. I have severe GP and haven’t needed my stomach cut out or anything (touch wood).

Also the meds sometimes start working better when combined with other treatments. I need less meds now that I’m on the feeding tube.

And a warning. The first month or two on a feeding tube can be very difficult, your body has to get used to it and there diarrhea and pain and lots of other stuff. And my tube ended up lodged in a bad position. And they don’t give you good info about how to care for it, you have to learn on your own.

But even with all that, the tube saved my life so I am very glad I have it. I might not be here by now without it.

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