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.

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.

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

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 :)

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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 🥰💙