tricky ol’gut

It’s the master of tricks.  My gut has a new one.  It’s called “lay there and don’t do anything.”  And just because that’s what’s going on up top, doesn’t mean that’s what’s up in the lower GI.  Oh no.  It does not.  My gastric emptying study, called “a little slow” and “slow” by an ER doc and my GI doctor (wait, what?  ER?  Yeah, I’ll get to that in a minute) is slow enough to count as officially gastroparetic (my made up adjectival form of “gastroparesis”).  But my lower GI needs to be told that part because it still has the raging kicking my ass in steel toed boots thing going on.

The result is not good.  The result is an increase in those puke and pass out from the pain on the can events.  I had one Wednesday.  It landed me in the ER.  I don’t go there lightly.  But the pain this time was more than I’ve had before.  More severe, more intense, more unrelenting.  And the passing out.  And the puking.  It just kept cycling.  Usually, it’s a couple of cycles of horribleness with some resting in between until things work themselves out. And  when I say “usually”, I mean that this has happened before but prior to this year, it was about once every couple of years.  Now, it’s a couple of times a month.  And this week, there was no rest period.  It was pain at an 8, to use the tired old rather useless pain scale, peaking to a 10.  At 10, I will vomit.  At a sustained 10, I will pass out.

So off to the ER.  Via ambulance, because my husband didn’t want to tempt fate on the “no passing out” streak I think.  I don’t blame him.  “I’ve never seen you in that much pain” he said.  Yeah.  I’ve never had that much pain for that long.  And I’ve broken a limb, had endometriosis, adenomyosis, subluxations, and migraines.  I’m not a stranger to pain.

The ER wasn’t bad, the ride there was.  Rush hour traffic.  Bouncy no shocks ambulance ride.  I felt like someone had strapped me to a wagon and sent me down a rocky slope.

Best thing about the ER?  Two bags of fluids and IV antinausea meds.  I refused the narcotics.  The ER doc was really nice about it.  I explained, through gritted teeth, that I really thought a big gut slow down was behind this and I didn’t want to take something that would just slow it down more and put me in the same position in two days.  Please can I have some toradol?  Why yes, you can.

I slept for at least an hour straight after that.  Then waited for the GI doc to make her way down.  All total, I think I was there for about 7 hours but I really don’t know since I have no sense of what time I went in.  They’re crafty about where they place the clocks in the ER.  I woke up, felt like I needed to go again, tried, and the puking came roaring back.  So more antipuking meds for me.

GI doc came in and told me that the gastric  emptying test was abnormal (yes, I did see that in the online record that I checked after playing phone tag with you for over two weeks). I had done a lot of research on gastroparesis/delayed gastric emptying in the meantime.  I had been trying to take care of it myself and hoping that another crisis wouldn’t hit before I saw her again and was able to make a treatment plan.  Didn’t work.  So here’s the plan.

  • Low dose oral erythromycin
  • Possibly start reglan or domperidone as a rescue med (yes, you can take them that way, I am told)
  • Even more Zofran
  • A change from amitriptyline to nortriptyline
  • Modified diet

I also asked about my other meds.  She didn’t seem to think that any of them would be the culprit in these exacerbations.  I disagree, and I think my migraine meds are largely to blame.  Tizanidine and fioricet.  So I am going to see a new neurologist to try to find a less gastro-paralyzing migraine treatment protocol (my former neurologist left the state in a huff in October after sending a perplexing letter to his patients with oddly right-wing wording about the difficulties of being a provider in the Northeast.  The letter was dated a week prior to when I got it, and it gave me two weeks to come and get my records, which I didn’t have time to do in those two weeks.  Thanks guy!)   GI doc and I talked about diet, about small meals (I eat once a day on work days, and not much at that during the high nausea times….my ER bloodwork is showing signs of that practice.)  She was a little dismissive of the difficulties I’ve had finding a dairy free liquid supplement.  If/when I ever do get a meeting with the dietician, that is first on my list of things to talk about.  She also said I had to go low fat, even liquids, which goes against what I’ve read….that GP patients can usually tolerate fats in liquids.  And downplayed the “no fiber” thing.

Color me not delighted.  At the whole thing, but in very large part because of the sense I’m getting that she feels that drugs can do no wrong and that drugs alone will fix this.  I do not love that approach.  I am on a lot of meds.  One of the first things anyone with slow gastric emptying should do is examine their meds to see if there are any that might be responsible and try to find ways to modify them.

So there’s the new trick.  I’m exhausted from these.  I spent my recuperative day off yesterday hoping for a normal bowel movement and looking up new therapists.  Not a lot of luck on either front.  I have a list for the latter, but no one really jumps out as super in terms of specialty and location.  Location is important because if she is too tough to get to, I will not go when I am fatigued or when my routine is complicated by difficult to manage symptoms.  I do need one though.  This new trick has really hit me hard.

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  1. Really hate to like this, but doing so because you’re so good at being your own advocate. This is sooo awful–really sorry you’re dealing with it. Had a similar experience with the right-winger doc who hit the high road… Lol! I have no experience w/migraines (that’s my mother), but I do take Topamax (tomiramate) for the anti-epileptic properties (helps a tad w/the muscle spasms and I take the lowest dose–no GI effects).

    One concern–I’ve been on a TCA (probably mentioned) for 1/2 my life, 1st for my spastic pyloric valve and then to raise my pain threshold: doxepin. This is the drug that’s in between amitriptyline and nortriptyline–the latter majorly reduced my pain, but I couldn’t tolerate the side-effects. I get the same side-effects with the doxepin (and not with ami.)–all the anti-cholinergic crap and so I take a teeny liquid dose and it works the same. However, at even 25 mg, it slows the ol’ bowel down and I’m concerned going to a stronger TCA like nortriptyline is going to do you in. Can you go up on Elavil/ami. (easier to write!) or take a low dose of dox.–I’m at around 8 mg (is that 8 mL?) but it’s Rx’d higher–just can’t tolerate the dry mouth, etc. There’s a major inability to get up in the morning with dox. or nor. that I never got from ami., but it didn’t help my pain so couldn’t stay on ami, regardless.

    Well, my 2 cents as my father takes dox. due to his non-EDS rapid-transit issues (lol) so going to a TCA higher than ami. would make me nervous. Why do generics have the longest effin’ names?

    Can you drink coconut milk for some fat/protein/other goodies? It’s available in milk cartons now but I developed a stupid allergy and some GI issues to it. I think it used to help with the nourishment before and I’d add throw it in the rice cooker, drink it, whatever. I’m with you on the liquid supp. there. I just do the rice protein powder as I can’t tolerate anything else. Oh, there is an egg white powder but it has some sugar substitute that messes me up. There are dairy free liquid supps, but they’re soy (can’t do that either)–can’t think of the brand as it was yrs ago. May have been something for dieters (like a meal replacement). Idk, found that 13 yrs ago. Lots of mystery ingredients in those things, so watch that.

    Good luck on this–so hope you can get a handle on it. Chicken soup? Long reply per usual… A

    • I’ve been told, although not sure that I buy it, that the nortriptyline was more associated with diarrhea, as in causing it. This has come up a few times with neurologists who were wondering if it would make sense to change me from Elavil to that. In the context of my gut’s prior state, the answer was hell no. Now that it’s slow, I’m giving it a shot. We’ll see. Again, not super sure that this is an answer. Might make things worse. It’s hard to find good specific info on the specific tricyclics, so I appreciate your feedback. So for you, nortript. slowed things down, more so than Elavil? Never heard of Doxepin, I’ll look it up.

      Coconut milk. I don’t know. I tried coconut water and found it disgusting. I tried those coconut milk ice cream things and reacted to something in it, but it could have been an additive to make them ice creamier. I could give it a shot. Is the milk like the water? If so, then I may have to pass. There was something just inescapably funky about the water than made me gag. Don’t need gagging right now.

      Chicken soup. That was dinner this week. Glorious chicken soup.

      • Coconut milk is from the meat of the nut (not the water inside–used to drink that right out of los cocos in Mexico! It’s very silky (may be a tad slimy to some). If you don’t like the water, I’d pass on the milk. I love it, but on the bad list now.

        OK, I’m a TCA expert as the ones I took are primarily norepinephrine reuptake inhibitors (like NRIs) and the ones that block the reuptake of norepi. more (doxepin and then nortriptyine based on my experience) raise my pain threshold more and more, thus less pain. Elavil (ami.) was like a sugar pill and I never got GI relief like you even from doxepin (which my dad does)–just the pyloric valve issue finally stopped when I started it. Doxepin is known in most other counties as Sinequan, btw. I didn’t see a list of these by strength either–it seems they vary by whether they’re working on norepi. vs. serotonin more and serotonin does nothing for my pain and SSRIs made me super sick. I presumed you were taking these for pain or for GI issues like my dad (also helps his anxiety-weirdness issue) and dealing w/one of those docs. Wasn’t aware they helped migraines (for pain?). As a side-note, the best for pain was Strattera–a straight NRI (not a TCA) used for ADHD that had the worst anticholinergic side-effects (due to being a strong NRI) and I couldn’t take it at any dose, but my body pain was at a level 2 (!)–boo hoo. I could have gone back to work!

        I totally disagree w/your neuro, unless my entire family and I react Abby Normal to these. Basing this on 20+ yrs of experience w/TCAs at a million doses and yada, yada. The more NRI-effect, the more anticholinergic side-effects, and that includes constipation. I read that Elavil causes that the most (negative). Sugar pill! TCAs (not Elavil in my experience) are notorious for these side-effects–there was a fibro drug released a few yrs back that tried to mimic TCAs w/o targeting the cholinergic center of the brain–all exciting stuff. It succeeded in that, but made me nauseous so passed on it. Nortriptyline was nearly as bad as the Strattera for me, and the side-effects are typical (like the dry mouth and morning hang over).

        Above Elavil (or w/more norepi. action), it gets messy. Even with doxepin (at 25 mg or so), you gain 20-30 lbs that will not go away until you stop/lower the dose–it’s like the part of your brain that says you’re full shuts-off and you get a horrid sweet tooth (even says that on the Walgreens pamphlet!). I’d eat bags of candy a day! Yes, I know I’m too thin now, but I was 20 lbs overweight then–no joke–and totally miserable as I’m naturally “thin/average” and my GP was screaming at me about my weight that wouldn’t budge-even w/healthy eating and 1 hr of cardio daily! My cholesterol went crazy and my triglycerides were in the 300s and are borderline high still, even at 8 mg or so. Hate the drug/TCAs, but will be back to vomiting from the pain w/o it, thus the teeny dose. Happened to my dad, aunt, brother–whole family was on doxepin w/issues but only my dad and I can’t go w/o it. He lowered his dose too as he’s so sick of the side-effects after 30 yrs or so on it. Not sure if he’s in the ol’ WC non-stop again (he’s more like you there, or how you were, and it helps him big time)–will ask if he ever e-mails me and tell him I’m posting in on the www. I’ve dealt w/TCAs since ’92 so my little frenemies.

        Found this on nortriptyline: “Other side effects have included anticholinergic effects such as dry mouth, blurry vision, constipation, and urinary retention which have been reported frequently.” “General side effects have included weight gain which has been frequently associated with the use of nortriptyline.”

        OK, sorry to type my rant here (longest reply EVER), but I know that doc is wrong and am so worried you’ll be backed-up at both ends and will end up in the ER again. I wouldn’t be worried if you were in in rapid-transit mode all the time–would tell you to take it and put up with the shitty side-effects! I threw that drug away and my brother did way better on Elavil in the end (but is med-free now). Also, are you aware of the cardio side-effects w/TCAs as most aren’t? We’ve never had issues (they want you to stop them before surgery) but some docs have not wanted me on them at all (no choice) and I did read something about it on the site above which may be an issue for you w/the POTS: “Cardiovascular side effects have included orthostatic hypotension, tachycardia, syncope, PR interval prolongation, bundle branch blocks, and ventricular arrhythmias.”

        I wish I knew more about migraines to offer any medication advice–my mother was sick every month for days (hormonal) locked in a dark bedroom and puking (maybe why I don’t remember her?), but she is fine now (still has it post-menopause/hysterectomy) with an Imitrex injection ASAP, or else it’s a shot of demerol, courtesy of my step-father (the retired-doc) keeping a stash in the fridge.

        Hope any of this helps. I’d just make sure you have Elavil refills as the nortriptyline side-effects will hit pretty quickly and that way you have a plan B. Still lost on the neuro thinking this won’t cause anticholinergic side-effects! OK… Go rest your eyes–just had to send the big warning so you don’t end up worse, like w/narcotics that you mentioned refusing (I refuse those after surgery!). Why? Anticholinergic side-effects! Almost had an obstruction and was puking up everything when a doc made me try vicodin for my pain. Ugh!

  2. Anaphylaxing

     /  May 7, 2013

    I’m so sorry you went through this. How scary. I really hope this improves

    • Hi Ana,
      Thank you, that means a lot. I’m so glad to see you posting. I hope you’re doing ok.


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