I'm sorry this is scary, Stephanie. *big soft hugs* Why not go through the hoops of seeing the doctor and a nutritionist (who should be covered by your insurance as the appointment would be treatment oriented) and then see how this goes. You don't sound as bad as what the articles say can happen so with some meds and some help with food choices, you might find that this is quite manageable. I hope so anyways. Fingers crossed and spoons sent.

i did contact my PM doctor about my fentanyl. He said that opiates worsen this but i'd have GP anyway because I have POTS.

he said that i'm at the point where i would need the Reglan...I don't think my gastro would even fathom me going off my fentanyl since it makes my body hurt so much less.

Called my dietician...she really needs to hop on it.

also the cases where feeding is required are not common...most people w/GP are where i am so it seems.

You can handle a different way of eating. You've handled far worse. And your IBS will love lots of tiny snacks all day long (well as long as it's not hamburger-milkshake-cheese ).

A tummy pacemaker is also in the pipeline so hopefully in not that long there'll be a non-med lifelong option even if you get worse.

I didn't know there was a POTS-GP link.

I have Gastroparesis, and have had an endoscopy, amongst other things. Have you ever had a motility test done (eating the eggs?)
I def. agree w/ trying to get a prescription for domperidone. It has helped me lots. Not perfect, but def. 100000x better than Reglan. I got horrible side effects from reglan!
As for endoscopy, it's really not painful or anything, you'll get knocked out and then have a sore throat for a little while afterwards.

Good luck, and i hope you feel better!!

pps--if you don't hate eggs, try pouring eggbeaters in boilng soup/broth. It'll be kinda like egg drop soup and will give you more protein but very soft to eat.

Great tip, Lucie! I wouldn't have thought of that, but you are right on target. That's a great way to get some protein in without adding nasty texture or intense taste. Way to go!

*hugs*

Sorry I missed this (I haven't been on the boards in awhile), but it looks like there are some good suggestions here.

Hi, I've never posted on this forum before, but your post caught my eye, sorry to hear your going through this too.

I have severe Gastroparesis and I know how horrible it is! You just seriously cannot eat a thing! I must throw up about 20 times a day if I eat.

My Gastroparesis is caused from Late stage Lyme disease that went untreated for years. I am actually having a J-Tube put in because I cannot eat and am down 38 pounds now from only being 119 to begin with....has your doctor mentioned TPN or a Feeding tube as an option for you?

I tried Reglan, Zofran, Zelnorm, Erythromyacin...it was slightly helpful but not really.

I am also on Fentayl Buccal tablets as well as Oxycodone for Chronic pain due to Lyme and an Demeylinating Neurological disorder...so I am sure that definitely doesnt help the Gastric Paralysis!

I hope you feel better, and that the treatments work for you!

*hugs* My gastroparesis isn't too bad, but it does flare at times which really do suck! Good luck with your tests!!!!

Thanks...i love all the suggestions!

My endo is on thursday...i'm not nervous...i had a colonoscopy remember? My GES is on the 22nd...and i love egg drop soup...but hate eggs

it's doing better...i can eat food again

I have to start with the Reglan...and then do the list...i don't think we can go straight to the illegal drugs yet (non-FDA approved ones)

JS115: Welcome! My GP isn't severe...i've only vomitted a few times from it (i just don't throw up)...i've lost 14 lbs in total (i'm 5 feet tall and now weigh 95) and i don't know if i can even have the pacemaker because i have EDS.

i just have to wait and see....and yes there is a POTS-GP link...two neurological disorders...

Hmm... wasn't sure whether to post this here are in the digestion section,
but here are a few things you would maybe be intrested in:
I don't know anything about EDS, but my GI doc at Mayo told me the pacemaker is for those with severe nausea/vomiting. But it dosen't do anything for actually digesting food. (i don't know why)
Reglan sped up my digestion well. It also made me achy all over, extremely agitated/tense, and then suicidal. So just make sure you stay very aware of your thoughts and physcial body all around when on reglan. I do know it works for some...but for nausea, phenegran (sp?) is good. Certain anti-depressants also help with digestion (others do the opposite). Oh, and ibuprofen and certain pain meds slow down digestion.
Ok...fibrofog totally took over, and i forgot what the point of my note was. But hopefully this info helps (if you didn't know already...)

yeah i gave my therapist and GI a heads up that i'm prone to mental stuff...Elavil made me suicidal as well.

I'm sorry to hear of your diagnosis...its not what you want to hear, I know...

I was diagnosed with gastroparesis in 2004 and I am actually dealing with that part very well!! (for me, its the fibro that causes the most trouble now-a-days)

Before I was diagnosed, I lost a lot of weight, only being able to eat saltines and broth for days or weeks at a time...I was following the advice of my doctors and avoiding fiber...but I wasnt getting better

Then I found the answer for me...South Beach. Eating whole grains, fresh fruit and veggies and lean protein has been the best for me (and it helps with the fibro too!)

But the key is to take it slow. Slowly introduce foods back into your diet so you can isolate what does and doesn't sit well. Also EAT SEVERAL TIMES A DAY!!! That is the biggest key. Eat every couple of hours, because having an empty stomach can hurt just as much as eating something that doesn't sit well.

As for the Reglan...don't be afraid of it. It did wonders for me!! And I didn't have any side effects (and I'm usually prone to side effects). Reglan really is one of the gentler medicines and you should definately give it a try.

I know that the pain seems unbearable, and I know that you just want to find a solution. Just be paitent...it will come. I will keep you in my prayers...and message me if you want to talk more...this has just been the highlights!

Oh, I just noticed this...I was on Elavil and it turned out that it was making my gastropareisis much much much worse...maybe take a look at you medications and see if they could be aggrevating the problem!!

My fentanyl definately does...but without it i'm in tears.

Oh no...i ate like a cow on Elavil and gained 10 pounds!!!!!!!

I have Gastroparesis and POTS and I started taking Wellbutrin XL for depression 1 yr ago and it took my 24/7 nausea away. I tried to stop it 2x and I had a horrible flare.

I'm currently in a major flare and haven't eaten well in 3wks.

Reglan helps with my flares to some degree but I don't get any side effects.

I hope you get some control over this soon.



Dayna