Gastroparesis Question (re: treatment options)

[Heiferly]

Hey all, I have a question for those of you with experience battling gastroparesis.  I am just having a miserable time with my stomach.  The Ensure Plus shakes, even with only drinking half of one (4 oz.) at a time, are still leaving me feeling MISERABLY bloated and full, sometimes for several hours afterward.  Of course, I'm still taking in my fluids in the meantime, and I think that's sloshing around in there too to be honest.  It's hard to explain to a healthy person how 4 oz. of a nutrition replacement "shake" and some Crystal Light can feel to me like going overboard at Thanksgiving Dinner, but it can just be agonizing.  Sometimes it's even to the point where I break out in beads of sweat (on the 3 little zones of my body left still able to do so, LOL), and have hot flashes and cannot get comfortable regardless of whether I lie down or sit up or what.

SO, I saw my doc today and after physically examining my abdomen, she agreed there were signs of bloating (I had 4 oz. of yogurt for breakfast, LOL).  So we're going to try starting Reglan and something for gas as well (just simethicone).  I know that Reglan isn't supposed to be for long-term use.  I'm allergic to erythromycin, and from what I can see Propulsid has been taken off the market since I was on it last and domperidone isn't available in the US ... so ... ??  What are my long-term treatment options if the Reglan works but I have to go off it after so many weeks?  

Please tell me there are other medications (that are safe for long-term use) that are options for me?  It would be reassuring to know there's something beyond this but short of a gastric pacemaker ...

I know I should/could do the legwork on this research myself but I'm also having a miserable time with my bone pain right now.  My doc gave the green light on tweaking my pain meds slightly, but until this is under control, I'm just muddling through.  Hopefully I can get things back to bearable soon.

Hope this message finds you all doing well,
-Heiferly.

[Heiferly]

Funny this post should be bumped back up this month, because I have been through quite a bit with the gastroparesis, and FINALLY got referred back for a consult with GI and sent through another battery of testing this month.

I was yanked off the Reglan for extrapyramidal side effects in less than a month and as I mentioned above, erythromycin and its derivatives weren't an option due to severe allergy.  I was hoping GI would just go ahead and try domperidone when I got sent there, but they wanted to run tests first to make SURE they were treating the right thing.  Well, after the radionuclide gastric emptying study and the sitzmark intestinal transit test, I "proved" that I really do have gastroparesis and low intestinal motility, so I "earned" the domperidone Rx.  

I actually got the Rx today and am now working with my doc and my insurance to try to win an appeal to have the insurance pay for the Rx.  I'm also trying something different for the intestinal motility but that's another story.

[Heiferly]

I've had my thyroid checked up, down, and sideways; my sister has hypothyroidism so I have the full scoop on which tests to make sure to get.  So far, my thyroid is quite consistently a healthy little gland.  

Thanks for the tip, though.  There are all sorts of different problems that can lead to the same end point for different patients.  I know diabetes is the leading cause of gastroparesis, though not the predominant factor in patients with dysautonomia by a long shot.

[helyanna]

Hypothyroid people have very often gastroparesis. If my dose of medication  for hypothyroidism is slightly too low, then I begin to have gastroparesis. And it leads to heart problems. Many people do not know that they are hypothyroid.

[patient915]

Thanks for your support guys.  I'm still in the hospital (2 months now) mainly due to a bunch of complications but things are getting better.  Basically, gastroparesis ***** and I'm sorry you guys are all dealing with this too.

[tkimber]

HI! I hope you are feeling okay.  I just read that someone on here is in the hospital.  That is the worst news.  Am so sorry to hear that Patient 915.  I pray you can get out of there soon.  Ahhhh. I just wanted to say that I too have had gastric paresis for about 15 years.  IT seems to have gotten worse.  When it does, I have to do a liquid diet for a few days.  And I can't take anything like Reglan or any type of laxative to move things.  I can drink 2 tablespoons or so of "smooth move tea" that I get at Albertson's and I only steep it for a minute. That's it. Otherwise it makes me feel very strange and like I said I only drink a few tablespoons of it. That usually moves things.  And I've found that black cherries really break the food down.  I have put them in the freezer after washing them and a few nights a week I cut the frozen pieces off and eat them.It was weird at first to eat frozen cherries, but boy do they help!! But can't do more than 4 at a time.  I am on a baby dropper of zantac and I can only take .01 of the dropper.  So embarassing.  I can't take anything.  But it has helped the GERD.  I also bought a blender and have found that papaya enzyme helps break down food.  I have a great smoothy recipe if anyone wants it.  Or else I juice or blend....some ice-1/2 apple-4 baby carrots-pinch of raw ginger-1/2 date- add a bit of spinach or kale..just a half cup or so if you want.  I know it sounds terrible but it's really delicious and moves that food and not too fast.  But of course everyone is different. Don't do too much of it, don't want to give you a stomach ache. My papaya smoothy is yummy and easier on the tummy.
2 or more big tablespoons of fresh papaya(the green ones have the enzymes) U can add a seed or two to blend;they are full of enzymes-1/3 banana-handful of ice-vanilla almond milk-1 big tablespoon of yogurt to put some friendly bacteria into your stomach to help move that food and a dash of cinnamon.  I just put my unused papaya in the fridge with plastic wrap till next time.  Mango also works great too. But sometimes my stomach just bloats no matter what. But if I keep up on this, it's work, but it does help so much.  

[Kessey]

I have been taking Reglan 4 times a day for about 3 years.  The only thing that I have noticed is my pinkie finger sometimes does a nice little dance all by itself!!  Otherwise the Reglan has been a life saver.  I used to throw up my entire dinner the next morning (completely undigested) now I only do that if I miss a few days of pills in a row.  Which happens while I patiently wait for my long term disability company to decide if I can go back to work every 3rd month!  It' s worth a trial to see if it will work for you.  Remember the FDA would never approve aspirin if it were a new drug today.  Most drugs are good for most people, some drugs are bad for some people.  Good luck and hope you feel better soon!    

[Heiferly]

Unfortunately, I'm banned from caffeine because it seemed to be causing a tiny bit of atrial flutter (though I was drinking way too much of it at the time ... self-medicating for what was at the time my undiagnosed narcolepsy).  Now, though, I'm on the Provigil for the narcolepsy which in and of itself aggravates my tachycardia, so I don't think I could tolerate caffeine on top of that (at least not in amounts greater than what I get from my decaf) without risking untoward effects on my heart.  Can't win, right?  

I don't know, maybe I'm just not understanding this properly and it is something that can improve after a short run with the reglan and I'll be able to go back to "normal" after that (at least for a while hopefully).  Some of the scholarly stuff I muddled through today seems to indicate that, if I'm understanding it correctly.  

On the other hand, I'm having a bear of a time finding material on gastroparesis that isn't about diabetes.  They sure do write prolificly about diabetes!!  If we could get like a 20th of the research funding they have for diabetes, I think we'd be in better shape.  I wonder if I have a skewed viewpoint on the numbers there or if that's accurate; I'm frightened to think that it seems accurate.  Dysautonomia, if you include ALL forms, really is NOT rare at all.  Of course, diabetics count for a big chunk of autonomic dysfunction so ... I guess I've run into some circular logic.  Sigh.

[buddysmom1]

I also feel as though I have a 9 month fetus in my abd after I eat even six small meals a day, but I find if I can walk a little after i eat sometimes i Feel better, but one of my friends who has POTs just got back from Mayo clinic in Jacksonville and her Dr there told her for gastroparisis to take a small cup of coffee yes coffee just small cup right before eating and it will help I have not tried it as I am scared it will make my tachycardia worse but she did it and says it helps she also says she went on the histimine diet and now her stomach is much better?? I am not willing to restrict myself that much and I just eat small meals, but I still suffer from the same thing. Maybe you can tolerate the coffee and see if that helps?

[CHRISTYDRAKE]

Those are the only 3 drugs that I know of.  Cody took erythromycin for 2 years and reglan for a couple of weeks.  The doctor did say we could get domperidone from Canada or Australia, but we never went that route.   They did a new gastric emptying test on him 2 weeks ago and it came back fine, so either it was a good day or he no longer is having that problem.

Good luck,
Christy

[Heiferly]

I'm so sorry you're having such a terrible time with your gastroparesis.  I feel bad complaining about mine when you're onto tube feedings now!  I've cared for children with feeding tubes before (back when I was working), so I understand how hard that can be!  Hang in there, and I hope things improve for you soon!!

Thanks for letting me know about the domperidone.  I'm really frustrated.  I'm eating, but it's like swimming upstream against abject misery at the moment.  I have high hopes for the Reglan (4x daily).  Of course, that's on top of omeprazole (every 12 hours) for GERD, ondansetron (4 mg every 8 hours) for anti-emesis/nausea, and the simethicone (2x daily) for gas.  I'm also on ranitidine (every 12 hours) sort of coincidentally for its antihistamine properties, which should also help my stomach.  If I can do all that and focus on doing the numerous mini-meals throughout the day that the dietitian recommended, maybe I can beat the feelings of bloating, over-fullness, lack of appetite, etc.  I haven't been retested yet to see if the anemia is getting better, but I've been really trying to work on it.  :-/

I just hope that the reglan works in the short term, and that I can find a good solution in the long term.  For a while I was doing really well being on top of things, and now I feel like I'm constantly playing catch-up trying to get a handle on the progression of my symptoms.  This too shall pass, right?

{{HUGS}}

[patient915]

I too have been having a miserable time with my gastroparesis.  I've been in the hospital for 6 weeks now and haven't eating anything (literately) the entire time I've been here.  I was on TPN and now I got a GJ tube and am getting 100% tube feedings into my jejunum.  Before this, I was on domperidone which I was able to get through a special FDA thing that my doctor has set up.  You could get domperidone shipped from Canada or there are also compounding pharmacies in the US that will give you domperidone.  It might be illegal but I don't think anyone is going to come after you about it.