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Ehlers-Danlos Syndrome

Botox for Gastroparesis – An Update

If you’re someone who is considering Botox as a treatment for your gastroparesis, I’m not going to tell you not to do it.  It’s a painless procedure that you get to sleep through, and for some people it does work, but it didn’t work for me.

It can take a couple of days to a couple of weeks to work, but it has been over a month now, so we’re calling it – it didn’t work.  Before the Botox, I was able to drink clear liquids with no problem at all.  Anything with dairy, and of course solid foods were problematic too.  It didn’t matter how “simple” the food was, I had trouble with it.  There were no foods which were entirely safe.  Some foods were obviously easier than others though (dry toast or egg whites for example).

Since the surgery I have been a lot worse.  I have trouble with clear liquids.  It takes me about three to five hours even to just drink a ten ounce tea.  I feel full eating a lot less than I did before.  Sometimes even just a few bites of dry white toast rather than a full piece of dry white toast.  It’s a lot harder to get food in throughout the day, even though I’ve been on a “nibbling” regimen for quite a while.  I’m still very nauseous.  I still always feel bloated.  I still feel super full a lot.  I still feel like I “force” a lot of the food I eat in.

I’m not saying it wasn’t worth a shot.  There’s not a lot of risk involved in this particular surgery so I definitely think it’s worth a shot if your doctor recommends it.  For me though, it didn’t work at all.  I’m worse off than I was a month ago.  I’m able to eat about a quarter of what I was eating before, maybe a half on a “good” day, and I’m down eight pounds in the last month.  Success?  Nope.

We’re not planning on going back to the gastroenterologist right away, however.  I’m still tapering off of the steroids and since my other options are surgical we have to wait a bit longer to discuss them.  So I’ll just hang on and do my best.  I just wanted to update with how things went since the surgery for those out there who are contemplating it.  For me?  I had no luck.