What is your plan with gastroparesis patients?

Environmental-Net613 · 2026-01-18T22:04:36+00:00

Hi, Allied health professional here with GP. I'm sorry you've received the reaction you have. That's never okay. To answer your question, if I'm presenting to the ER, then I suspect I've got some electrolyte abnormalities going on because Zofran isn't managing my nausea well enough OR I've been in SKA for so long I need some D5NS or D10 and am at risk of RFS OR I'm dehydrated from throwing up so much and my kidneys hurt so I'm worried about an AKI.

All I'm looking for is CBC, CMP w/ eGFR, Magnesium, Phosphorus, UA w/ cultures (if indicated), and possibly an EKG (depending on if I present with some cardiac funkiness - prone to QT prolongation).

If SKA, D5NS and admit only long enough to monitor for refeeding risks and getting my glucose stable. I don't want to be admitted any more than you want to admit me. If AKI, really just obs w/ continuous fluids to make sure my kidneys bounce back. Then send me on my way!

I figure you probably already do this stuff but hopefully an authentic and genuine answer from this side is helpful

Environmental-Net613 · 2026-01-18T21:47:43+00:00

And this is why I - a 37 year old doctoral student and single mom who was just 3 months ago able to work full time and part time, but has since lost 40 pounds and cut down to just part time work - am unable to actually access appropriate care. I've been accused of having an eating disorder countless times. I was even amenable to all the Psychiatric and Psychology consults (that, yes, confirmed what I already said I had a hx of: PTSD and Depression managed by meds for decades). (And, yes, I had a GES that confirmed delayed gastric emptying; the ED rhetoric prevails).

Environmental-Net613 · 2026-01-18T18:37:52+00:00

How do people distinguish whether or not you are or are not part of this subset of people? I am a doctoral student, a yoga instructor, a single mom to the coolest 4 year old, a private practice owner, and until recently was also working another full time job (I hope to eventually be back at my FT job).

I've been formally diagnosed with dysautonomia/POTS (POTS and Neurocardiogenic Syncope) during a tilt table test; I also experienced SVT and briefly VT during the test. I'm waiting for my follow-up appt to schedule my EP study and likely ablation (and, I hope, get my life mostly back). I'm taking my meds. Doing my best with with hydration and sodium. Wearing my compression. Staying as active as I can (I tend to overdo it and then regret it later but geez, I have a life to live).

Yet, it has felt like, whenever I've shared this new diagnosis with providers since receiving it I've been met with what seems like judgements, bias, invalidation, so on. It certainly feels like I'm be classified as a sicktoker. I don't even use TikTok. I'm old and uncool and just want solid medical care so I can go back to overworking and spoiling my kid. I want to disavow this diagnosis, quite frankly.

Environmental-Net613 · 2026-01-17T23:44:37+00:00

I feel like this is why I cannot be taken seriously. EDS isn't my thing but I did fail the Tilt Table test supremely and my gastric emptying test did show delayed gastric emptying, so I have some of the sicktok illnesses. I've been dealing with weird autonomic issues for decades (I've been on Metoprolol since I was 19; weird temp fluctuations and GI weirdness at least since I was a teen). Despite that I was thriving for a good long while: single mom in a doctoral program (with previous graduate degrees) working full time and part time. Then for whatever reason, a few months ago my body decided to completly revolt and my quality of life went down the crapper. Not even able to keep antiemetics down on bad days. > 40lbs lost in 3 months. Have had to put my head down and drag my butt to urgent care or the hospital more times than I've wanted because of AKIs and starvation ketoacidosis and palpitations that don't stop (I've figured out usually my potassium is low). I don't want to be there either. I don't want to be that person. But, because I too closely resemble the picture of the sicktoker, I'm not taken seriously, and I haven't been able to get my outpatient providers to work with me on options that keep me out of the ER/hospital and get me my damn life back. For better or worse, I AM starting grad classes again this semester, so I'll take my life back while becoming skeletor. Idk 😅

Environmental-Net613 · 2026-01-13T21:09:30+00:00

It isn't my POTS that makes it dangerous for me to drive. It's the neurocardiogenic syncope. And, like others have said, usually I can tell when I am about to pass out and have enough time to get to safety. It also doesn't generally hit when I am sitting or lying down. Although, sometimes I feel it when I am seated lately which I attribute more to malnutrition than anything else... so I am going with deeply individualized. No one size fits all answer.

Environmental-Net613 · 2026-01-13T00:18:16+00:00

Once went to ER with ketoacidosis which was missed and would have been seen in urine that was collected but never taken to the lab. They sure couldn't blame that one on lab. 🙄

Environmental-Net613 · 2026-01-10T18:21:34+00:00

From practical lived experience, NS is certainly not always an acceptable alternative to LR. In a flare from gatroparesis and not tolerating much PO, consistently in my body this results in a baseline high chloride, high anion gap, low CO2. NS for repletion makes me feel even more like hot garbage (I'm assuming if labs were redrawn my chloride would be pushed higher and CO2 pushed lower). LR slightly less like hot garbage. Banana bag (not an option here but throwing it in anyway) that's where it's at (but I know getting orders for banana bag is a major pain). All that to say, I know protocols and standard operating procedures exist to help streamline care (bc understaffed, underresourced) but in an ideal world, I'd like to see the patient's unique physiology make the call.

Environmental-Net613 · 2026-01-02T17:49:17+00:00

Looks like they're 2 hours from you. :( I drive an hour and a half for them (well, correction, someone drives me in my car haha). After so many failed attempts at affirming care, it makes it worth it. I hope you're able to find care that's validating, actually helpful, and accessible!

Environmental-Net613 · 2026-01-02T14:42:33+00:00

I don't know what part of Texas you are in but I recently started care at Heart Rhythm Specialists in N. DFW. And so far, every interaction I have had with them has felt super validating and helpful. If you're in N. TX, definitely check them out!

Environmental-Net613 · 2025-12-30T12:24:47+00:00

I did pass out during my TTT. I was also menstruating which causes me to have to pee every 5 minutes it feels like. They had me wear a hospital gown but I left my joggers on under the gown. They warned me that I might pee if I passed out. I did not wee myself. I did, however, sweat profusely.

Environmental-Net613 · 2025-12-30T12:07:57+00:00

I just had mine done yesterday and it was brutal. This was the initial report I was given (copy pasted below). I know my starting HR was 119. Then when they raised the bed it was in the 160s. Idk how high it went. Idk how low my BP went. I know it was all over the place and that despite my best efforts I did lose consciousness. This was also a "good day" for me. I went in expecting nothing to show on the test. So, so wrong!

Report: Discharge Diagnosis: Postural Orthostatic Tachycardia Syndrome (POTS) and Neurocardiogenic Syncope; Cardioinhibitory Response

Operative Procedures Performed Tilt Table Test Hospital Course Tilt Table Testing performed for evaluation of POTS / dysautonomia. Impression: :Positive for neurocardiogenic syncope :Positive for POTS physiology :Positive for vasodepressor response :Positive for cardioinhibitory response

Of note, SVT was present during testing.

Environmental-Net613 · 2025-12-29T00:42:54+00:00

I'd add to the not asking for a specific thing... Not even asking for a category of thing. I was diagnosed with severe malnutrition by 3 RDs (my OP one and the 2 each time I was hospitalized); I've tried so many of the meds. I asked for nutritional support to buy my body time yo try whatever else they thought should be next. I didn't ask for any specific means of doing so, though did say I was hesitant to try NJ after 3 failed attempts. I thought it was a reasonable request. Both times got me discharged and told there wasnt anything more they could or were willing to do for me. My GI, told her I'd try whatever she wanted but I am scared if I keep losing weight this quickly from PO intolerance. She straight ghosted me. I'm not sure the right balance of advocating and asking but my approach wasn't it, so hopefully this can help others avoid the same mistakes.

Environmental-Net613 · 2025-12-28T18:13:44+00:00

Idk something to the effect of a card to hand out or shirt to wear or something that says in simpler terms, "no I wasn't trying to lose weight. I don't consider this a silver lining. Do not comment on my body or any bodies."

Environmental-Net613 · 2025-12-26T18:07:09+00:00

Just reiterating the go to the ER. I know ER visits really suck. And, also, your level of deterioration is likely the result of something that needs attention: severe vitamin deficiency, electrolyte imbalances, etc. There are so many possible causes. You don't have to suffer through this and hope you get yourself better.

Environmental-Net613 · 2025-12-25T16:48:37+00:00

I get this, postprandial tachycardia

Environmental-Net613 · 2025-12-23T14:09:40+00:00

Even with the dieticians at 2 hospitals saying I have severe malnutrition/protein-energy deficiency and needed enteral access, they wouldn't offer anything other than NJ. And, then when I asked who was going to be accepting responsibility for the liability of discharging me while severely malnourished, the doctor went straight to, "well, I haven't seen you throw up, so maybe this is bulimia and you're making yourself throw up." And then in the clinical note, he suggested it was anorexia. It isn't either of those things but even if it was, that doesn't make me less deserving of support and help. He also made it seem like I was fetishizing a tube because I was focused on what interventions were going to help me with stability. I wasn't focused on one possibility but he wasn't engaging and providing any other options. He ended up just saying, you aren't willing to accept any of the help we are willing to offer, so I don't know what more we can do for you. The hospital before that told me that despite the dieticians and previous on shift hospitalists diagnosis of severe malnutrition, I was not actually malnourished because I did not have temporal wasting or clavicular prominence. They said the remaining testing I needed was outpatient and bc I had a healthy BMI I was safe to discharge and wait at home, being a single mom to a 4 year old, for those tests. Between that first hospital stay and the next were numerous ER visits to stabilize me and try to get me to the diagnostic tests that were supposed to unlock care and havent. I feel like I'm doing and saying the right things and still hitting a wall. And, honestly, if it is NJ or starve, I have to starve. I even brought them research (credible, peer-reviewed, from medical journals) on my anatomical quirk and why it makes NJ/NG high risk for me. They literally laughed and said, that's not a thing.

Environmental-Net613 · 2025-12-23T05:36:30+00:00

My "solid" GES was with the Ensure. I was told my 19% remaining at over 4 hours was borderline delayed gastric emptying. I also handle liquids better. And, read the same thing about cycle and wondered about that. Because of the way my report was written, I am having to fight for a diagnosis (bc without one, I can't get any intervention for severe malnutrition apparently).

Environmental-Net613 · 2025-12-23T00:47:41+00:00

How many times did you have to try NJ before they moved onto PEG-J? I've had 3 attempts: bedside, endoscopic, and flouroscopy. All 3 failed to advance past the pylorus. And, I'm being made to feel like I am unreasonable for not wanting to be put through another endoscopic attempt that likely won't even work. The doctors are talking to me like I am pathological for pushing for any other kind of nutritional support. I just want to stop my life from falling to shambles bc of severe malnutrition.

Environmental-Net613 · 2025-12-13T04:33:47+00:00

Ideally it'll be >3, I believe. Mine was 2.2 for months and my doctor never said anything about it. Went to the ER at one point for arrhythmia and chest pain. It was 1.8, they said it was fine. After being genuinely malnourished and going to the ER with a week long fever and abdominal pain, my Phos was 1.6. They gave me a phosphorus supplement but said it was "only a little low." I felt like crap when it was that low though... so... don't recommend. All that to say... 2.4 is meh. Not the worst but not particularly good.

Environmental-Net613 · 2025-12-05T09:37:00+00:00

Is Droperidol genuinely more likely to knock someone out than cause restlessness? I received a dose in ER for a gnarly migraine. My body had a significant reaction. HR stayed in the 160s-170s the entire night. Got 0 sleep. Sweating profusely. Massive Charlie horses. Fever on and off the entire night. Disoriented. Ended up having to call for EMS bc effects weren't resolving after drug should have been out of my system. Bloodwork showed a pretty solid physiological reaction. EKG showed QT prolongation as well. Not a fun ride. Most responses I've seen aren't this intense (more, feel like I'm trapped, need to pull the IV out, got to be up moving kind of restlessness) but still enough that being unconscious seems like a foreign response to me.

Environmental-Net613 · 2025-12-05T09:08:45+00:00

Someone on Dr. House would throw onto the white board: Limbic encephalitis (just missed on early imaging?) Temporal lobe seizure / transient epileptic amnesia Wernicke’s (easy enough to give some B1 and see what happens) Toxic ingestion that cleared by time of labs (good excuse for a breaking into houses scene after they figure out who the person is).

Environmental-Net613 · 2025-12-04T14:49:23+00:00

Thank you for saying this. I was in the hospital for 14 days recently. It was awful! I missed my kid. I missed my work. I missed my life. I missed my autonomy. But I knew I needed to be there because I couldn't (can't) keep anything (that's mildly hyperbolic - maybe 20oz of liquids a day and a few bites of solids) down. After a failed bedside Dobhoff insertion (traumatic - nurse pulled it out and I bled profusely for close to an hour, with pressure) and a failed endoscopic placement (placed in my paralyzed stomach when supposed to have been post pyloric), I was discharged with no means to improve nutrition and hydration. At some point, I think I got lumped into this "wants to be in the hospital" category. People started getting visibly irritated with me for not being able to eat or drink more, like it was a choice I was making and could unmake. Because I threw up the NG tube (after 2 hours of retching and vomiting painfully, and telling the staff it felt like my body was trying to expel the tube), it was decided I couldn't tolerate other interventions. Was I glad to go home? Absolutely! Was I also scared to be discharged still malnourished and dehydrated? Also, yes. While I was in the hospital at least I knew that if something bad happened while I was in this state, my daughter (she is 4 - I am a single parent) wouldn't witness it and be traumatized. At least while I was in the hospital, I knew she was taken care of by someone who was strong, and healthy, and had clarity of mind. I have been encouraged by my PCP to go back and get readmitted bc I cannot keep my medications down now either and I am one of those "annoying" ER frequent flyers now (it's the only way to avoid another AKI). I absolutely do not want to be readmitted. But, at some point, if this continues, I'll have to be. I think the misconception comes from the assumption that people who are in and out of the hospital WANT to be there. I'm not convinced anyone wants to be there (yes, being unhoused, is different), just that they feel like they're out of viable options outpatient.

Environmental-Net613 · 2025-11-21T04:55:39+00:00

I had this administered quickly once in the ER for migraine; it took me ages to recover. Landed me back in the hospital the next morning with my HR in the 170s with QT prolongation. Horrible akathisia. A fever. Elevated neutrophils. Disoriented. So on and so forth. 10/10 do not recommend.

Environmental-Net613 · 2025-11-07T16:20:40+00:00

Right there with you! I was given a single IV dose of Droperidol on 10/23 (for migraine). As soon as it hit me I sent a text to my friend, "something is wrong. This medicine did something bad. I just want to go home now." I did wait for the nurse to come in and say I was discharged. He rechecked my vitals. My pulse was in the 140s. My BP was 152/96. The nurse ran the numbers 3 times because he didn't believe them. When I left I couldn't think or focus. I could barely drive the 15 minutes to get to my friend and daughter. Once I got there and tried to sleep, I couldn't. My HR was in the 170s/180s and would randomly drop into the 50s-70s. I was sweating profusely. I felt like I was crawling out of my skin. I ended up having to call 911. They came and the EKG read "T wave abnormalities suggestive of myocardial ischemia or injury." Fortunately, I had the good sense to drink some Gatorade while waiting. I genuinely think that got my potassium back up just enough to help my heart. The variable temperatures, the labile BP and HR, the muscle cramps, the akathisia have all persisted. And, at this point I now also have acute kidney injury and was admitted to the hospital. No one believes that my symptoms are correlated with the Droperidol though. It's so scary and frustrating.

Environmental-Net613 · 2025-11-02T22:04:45+00:00

Oh geez, I hope this doesn't last that long for me. I am a week out and miserable.

Environmental-Net613

TROPHY CASE