Gastroparesis

It seems somewhat paradoxical that my gastric emptying time is so slow.  When I say slow, I mean it’s basically down to a trickle.  Top line below is my result.  Standards are below that.

Gastric emptying was:
17% at 1 hour, 29% at 2 hours and and 69% at 4 hours.
According to accepted international standards using this technique, median normal values for emptying are:
31% at 1hr, 76% at 2hrs, and 99% at 4 hours.
10th percentile values for emptying are:
14% at 1 hr, 50% at 2hrs, and 94% at 4 hours.
I still haven’t spoken to the GI doc about these results.  Keep in mind, the week…no actually the day, that I had this study, we had a terrorist attack in my city.  The BATH where my GI doc is was one of the hospitals that saw a lot of trauma patients, and admitted quite a few of them.  So they’ve been busy.  I left them alone for the week, figuring that the last thing they needed was little old me calling up and playing phone tag with the doctor.  And that week, other than during and immediately after the gastric emptying test, I was blessedly non-nauseous and didn’t have any gastric pain.  I was joking that the radioactive egg sandwich must’ve done the trick.  The study itself was rather horrible.  On the way there, my blood pressure took a nose-dive in the car and I passed out.  Showed up at the BATH looking like pounded crap, then had to choke down the egg sandwich, and I do mean choke down.  Lots of retching.  But I got it in.  Huzzah for me.  And I got through it.  And it was a good thing too because given the apparently fast state of my lower gut, I would never in a million years have guessed that I have gastroparesis.
Last week, I called early in the week.  She called me back after 9:00 PM.  I was nearly in bed.  So I let it go to voicemail and paged her the next day.  No call back.  And here it is a week after I called, and two weeks after the test and we still have not spoken about it.  I only got the results because the records eventually became available in my online record.
Last week I ate bad things (not a lot of them but enough apparently) and the upper GI symptoms are back.  Started up Thursday night, Friday things were unmistakably bad again.  While waiting for my follow up GI appointment on May 8, I have been researching gastroparesis.  And I’m now trying to modify to fit the situation:
– Started taking papaya enzymes.
– Resigning myself to a diet that is as liquid as I can get it, a visit with the nutritionist and a recommendation for a liquid supplement that is not made from milk products would be really swell but in the meantime, I think I’m just going to have to deal with starvation and jello.
– No more tizanidine.  I really believe this is what has gotten my gut into the bad spot it’s been in a few times now.  Last week not only included a cupcake, several pieces of candy, and a very ill-advised pad thai.  It included several days of tizanidine on top of a few days of Levsin.  This is now going to be an unallowable combo for me I think.
– Chewing gum.  Helps the stomach think it’s time to empty.
– Heating pad on the abdomen.  It helps.
– Walking after I eat.
– When I do eat a solid, chewing really well.
– A whole bunch of Zofran.
– Just in case low acid levels are contributing to the slow emptying, I am cutting back on the PPIs for now.
– Weaning down off the Amitryptiline.
I’ve also got a list of questions I want to ask, including can we try erytrhomycin before we do reglan, can you take reglan as a rescue drug rather than as a long term prophylactic, and do you have a good neurologist I can see since I’m going to have to either stop or significantly limit the drugs I’ve been taking for my migraines.
Ugh.  This was a new trick I could’ve lived without.  I’m guessing it’s been going on for a while.  And it’s probably autonomic and/or EDS related, so things like the PPIs may not make a difference.
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6 Comments

  1. OMG! Can’t believe you were in a B.A.T.H when that happened. Scarier than the fire! I keep hearing more and more about these upper GI issues (the nausea, etc) you have with EDS. Gastroparesis is even associated w/EDS on Wiki. I have no clue, but my sincere condolences. Rather odd to be have opposite issues at opposite ends, but I guess some EDSer get it that way. It’s almost like each med is making the other condition worse. I’m not a huge fan of support groups due to my non-fibro fibro days (maybe just that crowd), but wondering if that may be of use as at least you’re in a big Eastern city with some resources? How else to figure anything else? Out here, none of the docs really even know what EDS is. I heard that the lining of our GI tract is thinned and that causes the various issues, but didn’t read that in a scholarly article. I’d just like to EAT FOOD (!), so I got you…
    A

    Reply
    • So far, here they do know but they don’t seem to put it into practice. Not that I’ve seen at least. My cousin, who I recently reconnected with, is probably EDS (lots of OI symptoms and crazy bendy) and has the same GI symptoms as me. So strange that we’re not biologically related.

      Reply
  2. My daughter also suffers from something wrong with her bowels. She says they are “not working” and she is nearly always nauseous. I suppose we should take control now but she’s on so much meds and it’s only going to get worse… This is confusing me – wish there was a simple treatment.

    Reply
    • Ah, all my sympathy. Because what you don’t need on top of everything else is grinding nausea. You guys up in Canada have access to a GI motility med I don’t (not easily at least) – domperidone http://www.mayoclinic.com/health/drug-information/DR600561. It’s apparently the less neurologically screwy drug to increase gut motility and decrease nausea. Might be worth looking into when she’s ready to address it. I’ll tell you this: if her nutritional status is not good, all the skeletomuscular rehab in the world isn’t going to help the fatigue. I’m pretty sure the increasing toe subluxations I’m having right now are nutrition related.

      Reply
      • I’m confused by the number of different meds that we have to put her on. It scares me as she is so young. Hormones are one thing but then all that other stuff. I do I feel comfortable with that? The problem with her bowels is that her blood pressure falls when she’s having a hard time at that level and then she’s completely dysfunctional. I don’t know where to start … Plus having a diagnosis is good (yesterday I saw our family doctor who confirmed that the neurologist had confirmed all sorts of things in his report including connective tissue disorder, etc,., etc.) but now I find myself with everything becoming reality and the possibility of everything being treated and there is so much stuff it’s disturbing.

        Given your current state, what would you recommend? Why am I so afraid?

  3. I can tell you what I am planning to do right now, aside from trying to find ways to kickstart my stomach into emptying. I’m planning to start some liquid vitamins. It is clear that I’m malnourished, I knew this before I started tracking my food (last week) since my hair is falling out. So attractive. And also, as my primary care points out, the gastric motility is not helped by vitamin deficiencies.

    And for me, I would take the anti-nausea meds, unless they were going to worsen the thing that ultimately caused the nausea. Constant nausea is soul crushing. You shut down because to be “on” means to experience the nausea fully.

    Reply

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