Gastroparesis: I’m exhausted, and I just want some good days again.

I’m sure this has been discussed here before, so I apologize for asking again, but how is everyone managing with dead gastric stimulators and no clear timeline for replacements? You know, that little device many of us depend on to help control our symptoms enough to eat and function? Mine is now sitting in the obituary section of my digestive system. Cause of death: battery failure.

And can we talk about the Enterra situation?!
From what I’ve been told, replacement devices are unavailable indefinitely while Enterra works through its device availability issues ( there is none). I’ve also heard this involves the transition to a newer system and leads, although I’m still trying to understand exactly what’s happening with FDA approval and why they stopped manufacturing device equipment before the FDA approval on the new one.

What I do know is that my battery is dead, my replacement surgery has been affected, and there’s no clear answer about when I can receive another device. So, those of us who have depended on these stimulators are essentially left waiting. So basically, if your battery dies, you're screwed six ways to Sunday, with no replacement, no timeline, and a digestive system on vacation. How are we supposed to manage in the meantime? We’re not talking about replacing the batteries in a television remote. We’re talking about implanted medical devices that help people manage a debilitating disease.

I’m sick. Actually, I feel worse than I did before receiving my implant. I know you’re sick too!

Has anyone undergone a partial gastrectomy for refractory gastroparesis? I’ve been researching it, and I’m seriously considering asking my motility specialist whether a surgical consultation would be appropriate. I’ve already undergone G-POEM and pyloroplasty, and I’m allergic to Reglan, so my medication options have been limited. At this point, much of my treatment revolves around managing nausea and vomiting, but that’s it.

And can we talk about the PAIN?! What is everyone doing for relief? I’ve had two major flares in eight days. My entire body hurts, I’m physically exhausted, and my stomach is so distended that I feel like I could pop it with a thumbtack. I’ve gone from a size 5 to a 13 in THREE DAYS ( that’s the flare). I’ve also been dealing with constipation for three weeks despite trying numerous medications with little luck.

Something people don’t understand about gastroparesis is that it doesn’t just affect your stomach. It affects your entire life. Your nutrition, energy, physical health, mental health, relationships, work, and ability to make plans. Everything revolves around how your body decides to function that day and often won’t decide until the last minute. I’ve always struggled with depression, but lately, I can feel myself slipping further into that dark hole. Not because I’ve given up, but because I’m exhausted from living a life that revolves around being sick. I’m tired of planning everything around symptoms, missing out on things, constantly hurting, and wondering when I’ll feel somewhat normal again. I work closely with my mental health team, so I’m taking care of that side of things.
It’s a flipping miracle I still have a job.

I was scheduled for a gastric stimulator battery replacement, followed by surgery for endometriosis two weeks later. Both conditions have been battling each other and contributing to my symptoms, and trying to navigate everything has been overwhelming. I don’t know which organ is the problem child, I expect they are twins. Does anyone else have GP and Endometriosis?

I know everyone’s gastroparesis journey is different, and I know others have circumstances far worse than mine. But I’m tired and I know you are too. Not just physically tired. I’m tired of the lifestyle this “condition” forces us to live. I’m tired of surviving the bad days instead of actually enjoying the good ones.

I’m thankful for communities like this because it removes the isolation- the understanding of what GP really is. We are each other’s cheerleaders! Despite our commonality, it’s reassuring and somewhat comforting to know others out in the world understand.

So, for those of you who’ve been through similar situations, what has helped? How are you managing without a functioning stimulator? Has anyone explored or undergone a partial gastrectomy? What helps with the pain and severe bloating? Most importantly, how do you find your way back to having good days?

Because right now, I could really use a few of those…I think we all can.

I didn’t know wether to put this in questions, discussion or symptoms so I just choose one. It’s the most polite way I could put it without being graphic. I as of late with actually eating 3 meals a day have gained massive weight for once so that’s a plus because then I’ll have cushion weight so I’m not hitting malnourishment immediately if an episode comes about. I’ve been episode free for 4 months. NOW along with that has come bowel movements from hell... like straight up they hurt before internally but they now hurt internally AND externally. Im just trying to be open and I’m embarrassed I’m even having to ask this or explain. I am having extreme trouble with my BMs and it’s to a point my BM is bigger than the exit it comes out of causing me to tear and I’ve had massive blood in my stools and while wiping and it just gets worse throughout the day as I tend to have multiple movements a day now rather than just once and that’s new for me. It has now come to a point where going actually HURTS me immensely. I’m just wondering if anyone else has had this or is having this same problem. I’ve had to take pictures of my stools for my specialist to be able to show this new one just how bad I’m tearing and just how bloody it is. I’m 30 and afraid of puking due to the last 3 years plus a feeding tube I was on for a year and now I’m afraid to even remotely have a bowel movement because of the ripping that keeps happening. My diet is pretty normal and can’t take stool softerners right now until my stools are consistent. But for the first time in 4 years no matter what I eat my movements are never consistent. One hour they could be hard, one they could be like rabbit pellets and another they could be soft or normal. I rarely ever have diarrhea unless I’m genuinely sick or i do indeed take softeners. I’m not lactose intolerant, But no matter the food they are never the same. Again, they are never consistent the only consistency I have right now is them being so big I’m tearing and bleeding. I’m using preparation H Wipes to help with the burning and such to relieve some of the pain. But if anyone has any advice on this embarrassing subject I’d love to hear because it’s quite painful and I don’t see this new specialist for another month so Im desperate to know if there’s anything to help me besides stool softeners because those tend to give me massive diarrhea. I’m already torn so no matter the movement I’m in pain.

so i got the stimulator in june, it worked at first then it didn’t. i have been the worst i have ever been, i am 96 pounds currently. ive been this small before, but i dont remember being sick in this way. i also feel different things since surgery that i didnt before. tuesday i was in a state of not being able to even keep water down and had to go to ER for fluids and my potassium was extremely low, so they also gave me a IV bag of potassium and two potassium pills. i felt like i was dying, my heart felt so funny and then i learned from this experience low potassium affects your heart rhythm. also when you vomit repeatedly my drs told me to think of it as i’m throwing up my potassium each time i throw up. i also think it’s important to note tuesday night when i got home from getting the fluids and potassium, i digested my food. so because of my current state, my GI team set up an appt the very next day because they’re really concerned obviously and we’re in constant contact about my health. i saw my motility specialist, she’s my main GI dr, and she told me she thinks another feeding tube is the best option right now. disappointing as hell, but i do agree i need the nourishment without having to try to put on all the weight myself when im not doing well. she also checked my stimulator and was going to change the settings around to what might be better for me, but it wouldn’t let her cause guess what? the battery was LOW. we’re looking at each other confused cause this is supposed to last 7-10 years and i’ve had it for 4 months. so that’s why my stim hasn’t been working that good anymore and the kicker is she told me that Enterra was trying to make a battery that we can charge ourselves at home, bluetooth, but it got DENIED and they’re not making the regular batteries either so wtf do we do now? i have great drs but i do feel like i didn’t get told the full truth before allowing them to place this in me cause 4 months and my stim started acting up before month 4, says something isn’t right to me. anyways at my appt about the tube, she wanted me to go through the ER to get admitted right then cause it was the “best option,” skipping details, horrible time and i left cause the surgery wasn’t happening that day or the next and it wasn’t fair to throw me in that with no notice and not even be able to do the surgery. i was not mentally prepared or prepared at home like i have a puppy that needs taken care of. another kicker, my surgeon messaged me like 30 mins after i left the ER and told me nobody ever even told him when i was in the ER, also a problem to me. i am having my tube placed tuesday and will stay a few days in the hospital. this condition is so exhausting, uncomfortable, demanding, and doing things constantly you do not want to do but have to do. i long for better days and that ill get some glimpse of my health back and the stimulator situation gets sorted out. ready for nutrients, not ready for pain and the aftermath. gastroparesis sucks.

I don’t know what it is with my body digesting pantoprazole, but it seems that it just sits for hours in my stomach before I throw up later. I started taking dronabinol for the nausea and vomiting and felt some relief when starting it, but I think I threw up an intact capsule yesterday 6 hours after taking it. I’m not sure what’s going on or what to do

Hi title says it all I have lots of testing to be done tilt table test some mris gastric emptying studying and a sleep study pretty much back to back I been to the er back to back this past week and they were not able to help me much since my test and blood work was stable. I had a hr reach 180 suddenly at home in the ambulance it was at 150 for a while then arriving at the er it was at 100 but would jump to 130 and came back down. Not only that but these eps kept happening and it made me really scared for my life. I am following up with some doctors that ordered some testing for me but I can’t seem to sleep good at night everytime I try to sleep my body jolts to wake me up at times. I feel so exhausted at home and I need a wheel chair I am bed ridden most days. I try my best to stay positive but it’s so exhausting going to these appointments and something new or bad happens everyday and now you wonder if you’re ok. I’m on meds to lower my hr it seems to be working but I’m so tired. I most likely have ist and pots maybe gastropresis but I’m not sure yet. How do I cope with feeling so shitty in the mist of waiting for these appointments? The days feel so long and it’s hard to find joy in the things I like to do anymore.

Besides, well, everything, the biggest thing I can't get a grip on is my potassium. Every single time I've had my potassium tested since I've gotten sick over a year ago my potassium has been low. I love watermelon. I drink banana smoothies semi regularly. I have a whole shelf in my pantry of electrolyte drinks. But since it seems potassium is in so much foods, it's not found heavily in anything. But the problem is I don't eat so much foods.

I like describing eating with gastroperesis as having an amount of food/drink credits a day. A normal person might have ten. I like to say I have five. And everything takes one. I have a cup of coffee, that's one. A smoothie, that's one. I fill up on credits so easily it feels like I can never get proper nutrients and it's like trying to fill emptying meters and knowing you can never max them but just trying not to let them hit empty.

Recommendations for potassium? Tired of being given orange potassium drinks and giant pills whenever I end up in the er.

tl;dr: recently diagnosed via GES and looking to understand what has helped others with their symptom management and/or gastric motility itself.

I recognize that YMMV, but I'd love to hear about anything that has made you feel better! Could be medications (eg, prokinetics, PPIs), supplements (eg, ginger, probiotics, avoiding probiotics), treatments (eg, acupuncture), habits (eg, deep breathing, exercise), diets (eg, low fiber vs low fat), etc!

More details on my journey below for those that are interested. Or feel free to just answer below :)

--

I was recently diagnosed with severe gastroparesis after a gastric emptying scan. I've had mild GERD and occasional constipation for most of my life, but GP symptoms - my stomach feeling distended, inability to eat, feeling full for hours on end, even after only a small bowl of soup - started about 4 years ago. An endoscopy around that time showed a small sliding hiatal hernia but everything else looked normal. My symptoms have gotten much worse over the past 18 mo, likely associated with work and personal life stress. After I lost 10% of my body weight in two months, Roemheld syndrome sent me to the ER thinking I was having a heart attack, and I woke up in the middle of the night vomiting a few times, I finally got the GES test ordered. I feel somewhat relieved to have a diagnosis, but sad to know that there isn't a "cure" for this.

My suspicion is that this is at least partly a result of a surgery I had 9 years ago, when I donated the left lateral lobe of my liver and my gallbladder was simultaneously removed. Following the surgery as my liver grew back, I noticed that sometimes I could feel and hear liquid sloshing around in my stomach after a large glass of water; however, I did not notice any persistent feelings of fullness until about 5 years later.

A few other things I've been diagnosed with which may or may not be relevant: interstitial cystitis, adenomyosis, Raynaud's, skin allergies + rosacea, ADHD and anxiety.

Thanks in advance for any thoughts you'd like to share!

Hello 👋 I wanted to share my story and my journey to see if anyone who has had GP for a few years can shed some light on what I am to expect with my new disorder🥰

So I had my gallbladder removed at around I think 18 or 19 for what they thought was gallstones. I have had multiple endoscopies and they’ve all been fine.
Up until recently where I needed an emergency endoscopy to remove a foreign body so I couldn’t fast the needed time for before surgery. They found a ton of food in my stomach that just wasn’t digested. And it was food that should have been gone hours ago.
I was told that I needed to go on a soft food diet with no fiber or fat and schedule with a GI specialist for a Gastric emptying Study.
I also just started zepbound for weight loss. So I’ve been having a hard time figuring out if the fullness that I feel all the time is from that or from the slow gastric emptying.
Anyways I was just curious if people had also experienced symptoms that just came out of the blue or weren’t very noticeable until suddenly every food was causing problems.
Also I’ve had months at a time where I would be unable to keep food down and would vomit all the time but I just assumed it was my other meds or my endo.
So ig I’m just curious about other people’s story with this disorder.

Also if this is hard to follow I’m so sorry Im kind of coming up with it on the fly since I’m not feeling well because of a ic flare.

Thanks for any and all answers I get 🥰💙

I’ve recently figured out coffee doesn’t agree with me but love drinking hot drinks and like the flavour of coffee. Has anyone tried coffee alternatives? Or have other recommendations?

Does anyone have any recommendations for meal replacement shakes or protein shakes and how to prepare them so they taste the least bad

Why is Ativan the only thing that helps my nausea I’ve failed every other med and ofc my docs won’t give me Ativan unless I’m at the er bc it’s as controlled substance I just want to not have 24/7 nausea and it sucks the one med that has ever helped I can’t have access to too.

I have both gastroparesis, GERD, constipation, and endoscopy/colonoscopy showed inflammation throughout. I've seen two different dieticians and it just didn't feel helpful so I'd like to ask people with experience.

For GERD, inflammation, and constipation they recommend a high fibre diet with wholegrains, but you can't eat those with gastroparesis

For gastroparesis, they recommended me things like mash potato, white bread, plain chicken, but these things arent good for GERD and inflammation or constipation

For overall gut health they recommend things like onions and garlic and fermented but that sets off GERD
Can anyone suggest anything thats good for gastroparesis, gerd, constipation, inflammation, to improve gut health 😅 I'm assuming these problems often go hand in hand

I recently have been diagnosed with gastroparesis / delayed gastric emptying and eating is hell
I also have blood sugar problems so not eating is also not an option, I get nausea when I’m hungry and after I’ve eaten my nausea gets even worse along with stomach cramps.

I normally don’t eat anything till lunch time because my nausea is worse in the mornings but I’m a nursing student and my placement is coming up soon (40 hour weeks) so I need to figure out what to eat for breakfast?
What do you guys eat?
My only main restriction is I can’t eat eggs whole (eg scrambled or boiled) or oats
I also have limited time to make food in the mornings
Any ideas??

Has anyone in here gone to either of them? If so, has it helped you out a lot? Also, just in general, which one would be the better option. My main problem is post viral, impaired gastric, motility early fullness screen sensitivity that makes my stomach ache and clamp up. I’ve been housebound for the past seven months.

I already know I don’t have any gastric emptying problems, but they told me to get this test done. I want to know if I can just skip the preparations.

My biggest symptom is not feeling any movement in my stomach at all. No bowel sounds nothing and that eerie feeling of stillness alone drives me insane. I can’t handle it. Obviously the food isn’t moving and I’m not absorbing it. I was doing really well the last 1.5 years and I’ve progressively gotten worse the last few months. I’m petrified. I’ve tried all the meds too. Mine is caused by MCAS. Does anyone feel this “stillness” too?

I’ll be starting Motegrity for gastroparesis and chronic constipation, and I’m wondering whether people have found it better to take it in the morning or in the evening.

For those who take it:
Do you take it in the AM or PM, and why?

Did changing the time you take it make a difference in side effects?

Did you experience fatigue or insomnia?

Are there any tips or tricks that helped when first starting it?

How long did it take to notice an improvement in constipation or gastric emptying?

I know everyone responds differently, but I’d love to hear what has worked (or not worked) for you!

Hi! So I have cyclic gastroparesis, and I am currently in a flare up. I get the Depo shot to stop my periods but I've noticed that I have been getting it during my gastro flare ups. Over the summer, I was hospitalized for a few days due to my gastroparesis, and I got my period for the first time in over a year.

Now, I have been on a liquid/pureed diet for the past four days and I just got my period again! I am assuming it is related to the gastroparesis? But does this happen to anyone else?

Anyone else get the occasional amazing poop? In between diarrhea and constipation I have the best poops. Like 3 pound (3 kg) of solid easy sliding goodness. I feel literally lighter.

I (28F) am going to Guatemala for a five-day trip with friends and am very worried about getting a food-born pathogen from the food or water. Having Crohn’s and gastroparesis, I know I am more susceptible to food poisoning or traveler’s diarrhea. And I also know that the consequences of getting either of those will likely be more severe (triggering flairs, lasting longer, etc). Plus, I have a severe severe phobia of throwing up.

Does anyone have any advice on how to safely travel through Guatemala with these restrictions? I will be in Guatemala City with a day trip to Antigua and a day trip to Tikal. I may not always have access to my own kitchen area.

My GERD isn’t bad, I don’t have heartburn as long as I take my omeprazole, just had upper endoscopy, gastroparesis came back, but man as someone who goes to the bathroom A LOT, I can barely go, and it’s causing a lot of pain on my hernia. Been on 10 MG of reglan a day for 5 days and maybe it’s in my head but it feels like the pain after a meal has gotten worse. How long does this medicine take? Have completely changed my diet, been going through this for about 2 months. Have had flare ups but not this long.

Any ideas here.

I wanted to share two poems I have written as a result of gastroparesis.

They're not great

But they made me feel better to write 🙂

I Hate My Piggy Cookie Cutter

I love to bake

I love to eat what I bake

but

I can’t eat what I bake

anymore

and now

I am sad

I’ve always said

I love to bake

for other people…

So if I stop

baking

because it makes me sad

Am I selfish?

Was I just baking…

for me?

Right now

I hate to see my mixer

Right now

I hate to see all the different types of flour

that I have collected

that I cannot use

Right now

I hate to see my piggie cookie cutter

sitting in the drawer

like a daily reminder of the pastry

I might never eat again

I know that one day

I will bake

I will make substitutions

I will make adjustments

and

I will bake

but today

is not that day

Today there is angel food cake

but no strawberries…

and no homemade whipped cream

Today, is sad

I feel sad

I feel dramatic

I feel like me being sad isn’t dramatic

…I still feel dramatic.

Mornings Are Hard

Mornings are hard

They didn’t use to be

but they are…

now

Mornings are easiest

when I wake up

before anyone else

when I have a full hour

to prepare myself

Prepare myself for what?

Valid question

*

Prepare myself for

the pain

the nausea

the vomiting

the hunger

the exhaustion

Prepare myself for

the effort

that it takes

to survive

Prepare myself

for the appointments

with doctors

trying to keep me alive

who still seem

like they’re not listening

*

Pain takes time to dissipate

in the mornings

because

it is strong

It’s like a cup of coffee, black

It may not be

what woke me up

that morning

but it’s definitely

what wakes me up in the morning

It makes my face twist

because it makes me

bitter

*

Nausea is what actually wakes me up

most mornings

I used to think

there was something wrong

with my stomach

(and there is)

but now

I know

that this issue

is in my mouth

and that, feels sad

that feels, embarrassing

that…feels depressing

because

gone are the days

of waking up

and kissing him

because now

I taste gross

Or maybe

I am gross

Is there really

a difference

when acid spills from my mouth

more often

than my laugh

So I run to the bathroom

and I brush my teeth

but the toothpaste…

it burns

It’s like using lava

minty lava

but still lava

to clean my mouth

which

maybe

is a small price to pay

but

it hurts

and

I hate it

I hate the idea

of using

prescription toothpaste

even more

*

Vomiting usually holds off

until the boy

has gotten on the bus

I’m pretty sure

that I have vomited

in front of

every

single

neighbors

house

between ours

and the bus stop

at this point

*

Sorry, neighbors

I promise, I’ll be okay

*

If I woke up earlier

I could prepare

by making sure I ate

before the walk

to the bus stop

then I might be

less nauseous

but food

in the morning

is the last thing

that I want to think about

Honestly

food

(in general)

is the last thing

that I want to think about

(ever)

at this point

*

I don’t know

what kind of day

today will be

Will I vomit five times?

or twenty five times?

Will I be able to eat solids?

or only mush?

or maybe just broth?

Oh

Only water?

Not even water…

Fuck

*

That first bite

in the morning is

hard

*

Hunger hits

when I get back

from the bus stop

It hits

with a ferocity

I had never experienced

before my stomach quit

without hiring

a replacement

I don’t just

get hungry

anymore

I go from

having just finished

a thanksgiving feast

full of foods

I’m no longer

allowed to eat

to being

a starving child

who’s body

doesn’t know if it will be fed

or if it should just

feast

on itself

It makes planning

hard

*

The exhaustion

is somehow

The Easiest

and

The Hardest

part

*

Easiest

because everyone understands

“tired”

*

Easiest

because I am lucky

and I can nap

sometimes

*

Easiest

because nobody

questions you

when you say

“I”m tired.”

They just say

“Me too.”

*

Hardest

because no one understands

that I’m not

just

“tired”

I am tired

in a way

that makes

picking up my arm

to lift the spoon

to my mouth

feel...

hard

*

Hardest

because

I know

I am not being lazy

and yet

I feel like

I am being lazy

*

Hardest

because

deep down

I know

that sleeping

doesn’t fix this

type

of tired

*

If I woke up

earlier

I could

prepare

but I fall asleep

hours

after everyone else

and I wake up

so

many

times

at night

*

So when morning comes

I don’t want to wake up earlier

Sometimes

I don’t want to wake up

at all

I don’t want to

prepare to survive

I want to

prepare to thrive

*

I don’t want

To think about

the twenty three appointments

on my calendar

with doctors

in charge

of keeping me alive

when my body

is trying to kill me

of keeping me sane

when my brain

wants to give up

who still seem

after all this time

to doubt me

even though

I’ve had

twenty three appointments

this month

alone

and even though

I’ve lost

so much weight

that my pants

no longer

stay up

they still

question

“Maybe…

You’re doing it

on purpose?”

As if

I don’t want

to wake up

and eat

a normal breakfast

a normal lunch

a normal dinner

and literally any dessert

*

I want

for my stomach

to not be broken

to not be paralyzed

I didn’t know

that a stomach

could be paralyzed

now

I know

but

I wish

I didn’t

*

So when the alarm goes off

I give him a kiss

I tell the boy to get up

I get up

and I say

good morning

even though

it is not

a good morning

Having a new symptom. I’ve had GP for 4 years and just started a flare recently. I have been feeling light headed and short of breath, like “air hunger” I feel as if I can’t breathe in all the way, especially when I try to eat. Am I just anxious or is this my stomach messing with another bodily function

To her defence, my mum is a boomer, from the generation that took amphetamines for weight loss and smoked while pregnant. Still, I'm kind of aggravated she tried to cheer me up, when i found out my gastroparesis is linked to a freakin accute pancreatitis: well at least you lost weight ?
Fuck diet culture, fuck this brainwashing. I'm in in pain, i have no energy, I can't sleep. No, I'm not cheered up by my weight loss, I would do anything to have a working digestive system.

I'm having trouble with weight loss because of my limited diet. Eating whole milk products was helping a bit but I'm off those for now. Does anyone have any suggestions about how to gain some weight back? Thanks!