10:24pm February 25, 2013

Anyone with gastroparesis pacemaker?

Does anyone out there on tumblr have experiences with the gastroparesis pacemaker?

I have severe gastroparesis, diagnosed last year when I stopped eating and spent five weeks in the hospital, confirmed last week with a stomach emptying test that had such bad results I landed in the hospital again for most of a week.

I have had symptoms for at least ten years, more and more nausea, eating less and less. I was only able to avoid a feeding tube last year by going onto one of every type of nausea med they could find, Marinol finally sealed the deal and got me out of the hospital, also on five or six others.

The gastroparesis diet they at first tried to push on me was ridiculous. I couldn’t eat a tenth as much. But I now live on Ensure (for nutrition) and soup (for purely psychological benefit my neighbor makes a different flavor every day and gives me the broth).

I have severe nausea all the time. It’s only controlled by a combination of about six meds plus iron self-control. If it gets out of control enough to result in much vomiting I land in the hospital due to inability to keep my nausea and seizure meds down leading to a nasty downward spiral. That’s what happened during my gastric emptying test, lots of vomiting.

My mother has autonomic failure with similar symptoms to many of mine, and is on pyridostigmine (prescribed by a Mayo doc) with near miraculous results for many of her symptoms including gut motility and muscle weakness. I’m trying it starting today to see if it helps me any.

But I have a strong suspicion I might end up needing the gut pacemaker. My symptoms are severe enough that sometimes it’s a challenge keeping Ensure down. Despite all the meds and the iron will fueled by a childhood history of emetophobia (terror of vomiting, leading me to learn a lot more about controlling nausea with willpower than most non-emetophobes ever know).

And I don’t want a feeding tube, so I feel like I’m being forced between several rocks and hard places and having to choose the softest rock.

I already have one implant that may even be made by the same people (Medtronic I think), to help me urinate, because I have a spastic urethra. But this gut pacemaker sounds more complicated and hazardous with more restrictions. But it also sounds like the best chance I’ve got to potentially reduce my level of nausea meds (and nausea), and keep this from progressing to feeding tube territory, it’s been getting so much worse each year.

So I’d be really curious if anyone out there has experiences with this. I know nobody (at least not knowingly) with severe gastroparesis. So I can’t ask friends really. And I don’t know what to do. Of course I will talk to doctors but I’d like to hear from people who really have it. Half the advice I find for gastroparesis is for people who can still eat ridiculous amounts of solid food, not people who can’t keep down a bit of scrambled eggs for two hours.

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