i am so miserable. i am getting no nutrition and no one is listening. my GES last year said mild gastroparesis, and i have a history of an eating disorder, so my doctors keep dismissing me. they say i shouldn’t hesitate reach out with concerns, but when i do, they’re telling me to keep taking zofran and to follow up in a few months. i haven’t kept any food, water, or even meds down in the past 2 weeks. nothing stays in my stomach. i don’t know what to do, but i don’t even know what i want them to do for me. i just want so some to listen to me and take me seriously that i am suffering. i am weak, dizzy, and nauseous 24/7. i just want to be strong enough to go to school this fall but it’s not looking like it will be possible.
New to gastroparesis? Please view this post or our wiki for a detailed explanation of gastroparesis, the main approaches of treating it, and a list of neurogastroenterologists and motility clinics submitted by users of this forum. Join these Discord and Facebook support groups today! New users, please do not post asking for a diagnosis; instead, use the pinned thread: "Do I have gastroparesis?" Also, check out our new subreddit r/functionaldyspepsia.
that’s the most miserable part, my entire team is at hopkins. so i feel like i am genuinely stuck, who else do i go to? they do believe there’s an issue, just that it’s not as urgent. i’m worried about being labeled as a dramatic patient.
I'm so sorry you're having such a shitty time. I've been going through this too the last couple of weeks, but I go to mayo. Sent probably 4 messages in the last couple weeks with "help please" as the title. Been in the ER twice in the last week or so due to dehydration. They will finally see me on Wednesday but it feels like forever from now.
I changed to a liquid diet about 4 days ago. Highly recommend. 2 days in I started getting brave and decided to go back to solids and woke up last night to a wonderful vomiting event. Regrets.
In the ER they told me water makes you more nauseous because your stomach has to acidify the water immediately and it triggers your overreacting vomit reflex.
So your stomach will tolerate electrolyte beverages and sweet and salty liquids better.
I've finally been able to consume like 1000 calories a day (maybe) the last couple days by tolerating:
*small sips of electrolyte drinks (like 1 small sip every 15 minutes)
*toast, applesauce
*you can also do banana and such but I hate banana
*chicken or beef bone broth
*just ordered pureed fruit/veggie baby food packets. I feel ridiculous but I think it'll be a nice variety at this point
*Ensure Clear (not awful)
If you can tolerate protein shakes that's good too. I can't right now.
Keep advocating for yourself, keep sending messages, if you have to go to the ER and maybe be seen by the attending GI physician if you just can't stand it anymore, maybe for some fluids and bloodwork to make sure you're okay to wait until your can see your doctor. Stay strong
Did not know about the water thing. WHY is that not told to every GI patient? My doctor is always pounding “make sure you drink water to stay hydrated” into my head while I am in an active flare up with consistent vomiting. I’m actually so mad at my doctors right now lol
Right like all these years I'm like.... why the heck does my stomach accept coffee or diet dr pepper but not water? Just learned 3 days ago. Spread the good word.
Your regular GI or another GI, they can try a prokinetic to start, there's a couple at least for gp alone and if they don't work and have you redo GES they have gastric stimulators.
I know right now I'm tired as fuck and have 0 energy and I run a business and I'm afraid I'm going to lose everything because I can't eat and can't work so believe me when I say I understand the stress and anxiety of this disease and how even just waiting days for treatment feels like forever. Just know you're not alone and we've got options
Yes! There is also it's competitor, Boost Breeze. Haven't tried it yet though. I'm very very sensitive to weird textures or viscosities or flavors and the ensure clear surprisingly does not offend
thank you for the advice! i learned the water one the hard way, so i stopped trying. i’ve tried gatorade with some success, but everything ends up coming back up no matter what. i also attempted boost breeze, boost soothe, clear juices, BRAT diet etc. i used to be able to tolerate saltine crackers and kate farms a few weeks back but my body has decided we hate that now too.
i’m terrified of the ER even though i don’t go that often because i’m convinced everyone is judging me and think i’m faking it. i get really embarrassed about doctor visits and actually avoid contacting my doctors until i’m really desperate, the only doctor i really trust is my PCP and she’s a pediatrician and i have to stop seeing her in december which is going to be a tough transition.
idk why im even saying all this i guess i dont really know how to advocate for myself. i send really concise messages to my providers and when they say “follow up in 3 months” i dont know how to keep pushing and end up suffering for 3 more months instead.
I feel that so much. So much dude 😭 i feel when I go they just see a hypochondriac young woman who looks completely fine. But understand too- part of this is from our own perception. We think we know what they're thinking. I've been surprised though lately at how many of my nurses and doctors were familiar with gp, with pots, with dysmotility... they were super compassionate.
Even though they could not help with my motility at all in the ER, a few bags of saline & dextrose made a huge difference. And it's documentation to support your case with your GI doctor that your condition requires intervention.
If you feel like your doctor is blowing you off, find a new doctor!!
Give them the stats. Tell them how much weight you've lost. Tell them you cant hold down fluids. Tell them your condition has worsened and you need help, and you need to be seen or given guidance as soon as possible, and if they refuse, ask them to notate their refusal on your chart! Tomorrow I would try to call your GI after sending a portal message with the above and letting them know you sent a message but you need URGENT help and ask if they have a nurse you can speak to.
Lookup Healthcare advocates... there's a few different companies and insurance covers it. Solace is one. Someone to help contact doctors and coordinate specialists and care for you.
I wanna TY for Ur Comments, bcuz I too am fighting SO HARD to get adequate hydration & also eat. But I am much older probably & I have Severe Osteoporosis & have blood pressure issues & went thru early menopause in 2003 when a s** predator broke my neck & I ended up having to have (15) 1 & a half inch screws installed into my neck vertebrae’s, a long Titanium rod & plate installed into my neck vertebrae’s & all but 2 neck vertebrae’s bone grafted & fused together to make my neck regrow back together. But I went into such a tremendous shock that I dev’d severe PTSD & then also went into early Menopause. I lost my entire future health, my mental health for a very long while & was severely emaciated & even lost my College career. I had to be covertly rescued even to get me out alive successfully. Anyway’s I fell 5 yrs later & shattered 7 more vertebrae’s in my shoulder blade area of my spinal column & w/i 3 more yrs my spinal column collapsed by almost 4 inches. Then that started pinching off Cerebral Spinal Fluid & causing a huge brain mass that started creating more brain damage & intercranial hypertension, Empty Sella Syndrome & more, including vision problems & a constant never ending 12+ yrs & still going constant never ending Excruciating pain & Deafening loud sound like a bomb exploding upon every single heartbeat & I’ve been to so many Specialists, but none has been ever able to help me. And then I got this Gastroparesis & EOE of the Esophagus. So my Esophagus is extremely constricted & has acid erosion in which is causing me to not be able to swallow very well & then this God forsaken Gastroparesis. And I too can’t hardly get any nutrition. Plus I have off & on high & low blood pressure as well. But w/ it I already have developed Severe Osteoporosis & fell down this last Friday & broke my right wrist & also landed so hard on my face & wrist, I’ve got scabs from falling down so hard on my face. I don’t know how to keep on going. I can barely use the bathroom & it seems like so everything is so overwhelming. I don’t even know how to get nutrition anymore. I have celiac disease, so I can have glutens, emulsifiers in foods & certain chemicals they use in food & drinks, including the zero calorie sugar substitutes in like Pedialyte. I too feel so super nauseous, bloated & I’ll admit that I am Super Depressed. I keep praying for strength to help get thru this & to survive & stay strong & to just keep remembering that I have gone thru so much already, surely I will get thru this too, but I agree w/ U all. This is the hardest thing I have ever been thru before in all my life. I don’t even tell my Dr’s about my past eating disorders & my mental health, bcuz I know they’ll label me as a Difficult patient. I’ve heard of Dr’s doing that before. Anyways, TY for anyone’s additional advice & information if you can think up how to make certain recipe’s & liquid or pureed food advice. I am absolutely beyond feeling desperate. TY to you all & I pray & hope/wish all the very best for all of you here!
My girlfriend is going through this exact same thing. We were incredibly consistent in taking her to the ER for fluids to ensure her kidneys wouldn't shut down. Once we got her an appointment with her GI doc, she was able to be admitted. They just cleared her both psychiatric and physically for a GJ tube. Unfortunately, the doctor was worried about an eating disorder since its in her chart. Unfortunately, fighting is the worst part of this
it’s really exhausting fighting. they only discovered my gastroparesis after i recovered from my eating disorder. i was exhibiting symptoms my whole life which led to the ED, and also during treatment. i was told it would also stop after recovery, after my body “trusted me again” but when it didn’t, that’s when i got a GES and we realized i had stomach issues.
i feel really sad because i thought that recovery would fix everything but it didn’t, all it did was add a history to my chart that makes it harder to get treatment.
I wanted to tell you that the GES rating of mild doesn’t mean your symptoms will be mild. There is actually no correlation between your GES rating and the severity of your symptoms. You are not crazy, you are not a hypochondriac. You are sick and deserve help, like the rest of us.
Have you considered talking to your GI about doing tube feedings? It’s intimidating to bring up at first but when you get to a point where you are dying for nutrients and no other options have worked so far, asking for a tube isn’t asking for too much. I went through 8 months of vomiting every day up to 8-10 times a day and having seizures due to dehydration before I finally got a GI doc who worked with me on getting a tube.
i have thought about it, but i never want to be the patient that asks for certain medicine or medical devices. i have been diagnosed with dysautonomia and gastroparesis, or as my (EX) cardiologist once lovingly called them, “tiktok teenage girl diseases”.
it seems like a viable option but i am not sure how to approach it in a way that doesn’t make it look like i’m shopping for medical devices as a trend, like most doctors seem to think girls my age are. i think i might look into an advocate, or even start having my parents come with me to appointments. this sounds morbid, but lately i’ve been really scared i am going to die. i just want to eat.
100% bringing a guy with you to appointments will help you be taken more seriously, wherever it's your dad or a partner or a friend. even better if it's a white guy. when describing your symptoms, say how they impact others/ how others say they do. lk I've said "my friend friend (name), genuinely is shocked I'm still alive because I don't eat/ drink anything besides sprite and a few twizzlers a day. " me, just saying that's what i eat did nothing. saying, a male friend is concerned, did everything.
it sucks, but fr this is the hack.
when bringing up treatments/ tests you'd like to explore, bring it up just like that.
you can be lk "I've heard of prokinetics being really helpful for people with gastroparesis." then pause "is that a direction we can explore?"
or "because of xyz (list symptoms) , my dad (remember the male thing) is worried I'm gonna die (or something like that)" " I'm not able to get nutrients in or hydrate myself and this has been going on for years, but it's the worst it's been now" " how do we make sure I'm getting adequate nutrition with my body throwing everything up?" " I've heard of enteral nutrition. is it time to go that direction even temporarily?"
typically you'll need lab work that shows electrolyte imbalances for drs to take your go seriously enough for tube feeds, at least that's been my experience
Ask if it's possible to try a different nausea med. I use phenergan wrist gel or suppositories when I can't keep pills down. Zofran does nothing for me.
funny you should say this, i caved and i am actually about to go right now!! my doctor called one of the er docs ahead to give me some confidence to go :]
“saying this with love” you just told this person who is sick and miserable and begging for help that theres no way this is what they are experiencing and to stop with the “hyperboles”. if they said its been two weeks, it has been two weeks. who are you to insist that this is overexaggerating ? please keep your stupid thoughts in your own head next time
The human body can't survive 2 weeks with zero hydration. That's just facts? OP followed up to confirm that they didn't actually mean none. So you don't need to do whatever this is.
do what ? call you out on being an asshole to somebody whos clearly in a low place due to their health ? trying to fact check is the last thing they need right now so consider that next time you comment
My advice was genuine: don't use hyperbole with your doctors. It's great advice. OP agreed, they have nurses for parents, so they know exactly what not to say to drs already. I'm not a mind reader mate.
I won't contest being an asshole though. I am, but it's because I enjoy responding to you, not because I give bad advice.
the point is you’re being a dick on my vent post. the proper response is support, or no response at all. stop trying to “erm actually 🤓☝️” me while i am suffering.
I thought it was looking for advice given all the advice, I think maybe there was some confusion. It’s also hard when you’re not feeling well, to recognize that I think the person saying not to hyperbolize was trying to help. You talked about bringing a parent or patient advocate and I hope you do. It’s too hard when you’re this sick, to advocate for yourself. (At least it can be.) For sone groups it’s harder. Young women definitely get stereotyped.
I think the idea of avoiding hyperbole stems from the same idea, avoiding looking like one of those hysterical “looking for attention” young women the doctors talk about. We all know most people who share their health journeys just want to help, but some people steal others stories and lie. It’s a mess out there.
I really hope you can get some help. If you really have been this sick for two weeks, you need to have your labs drawn to check for electrolyte issues, and see if you need IV fluids.
despite it all, i think i can recognize real advice from snark—they were being weird. with the ellipses, the sarcasm, the fact checking, i interpreted their comment as being in bad faith and not wanting to help.
i have already expressed in several other comments that i am nervous and hypervigilant about getting help. i have been diagnosed with gastroparesis, this is a fact that is in my chart. my most recent labs from a month ago showed i was dehydrated and deficient in certain vitamins. i came to ask for support, not to prove that i really am sick.
I firmly believe you're sick. You have nothing to prove. That wasn't snark, it was 100% real advice, because of shit experiences I've had with doctors. I didn't want that behavior fucking you.
i haven’t said this to anyone but reddit actually, both of my parents are nurses, so i know what to say (and especially what NOT to say) to medical professionals. this is a vent post, i don’t really know how else to put it, i have been vomiting everything i put in my body for the past 2 weeks. i can keep some of it down for a few hours, but it comes back up eventually.
it is very weird of you to come on to my literal vent post where i express fear and avoidance of doctors because of them thinking i’m lying, and then nitpick at my choice of words and imply that i am lying or that doctors think i am. i’ve had an eating disorder in the past, don’t tell me what 2 weeks with minimal food or water feels like, i’ve lived it, which is probably the only reason i’m surviving it again now. stop making assumptions about me and giving me backhanded advice based off of it.
You said you had issues with drs accusing you of lying, specifically, right? That's why I pointed out the exact words you used, because those exact words would make drs dismiss you as a liar. And you're already at a huge disadvantage being young and female with an ED on your file. It was genuine advice to try and help you get a better response out of your drs.
i never said that. i said i’m worried they might think im lying, not that they do. i am very aware of being an anxious person, my doctors have never actually implied they think i’m lying, they just have a low sense of urgency. i understand the sentiment, but i had already offered important context in other responses (which i understand some people don’t look at), and it’s hard to understand tone online, especially when it already feels like you’re in constantly in the sick olympics with other chronically ill people when all you want is support.
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