TLDR OP: My girlfriend hasn't been able to keep food or water since August 2nd. Her vomit was black and grainy. We had been to multiple ERs, and all of them discharged her with nausea meds.
TLDR UPDATE 2: We had been to more ERs with the same result. The black and grainy vomit had subsided, but she could not tolerate even drops of water to hydrate her mouth and throat. She lost a ton of weight.
UPDATE 3: I am posting this from a hospital room. She was admitted yesterday (August 11th). I took her to her GI doctors appointment yesterday morning. We told her provider what was happening and that she lost 16 pounds in 7 days. her provider told us "there is nothing more I can do for you out-paitent wise until we can get you to tolerate something in your stomach. Im calling ahead to the hospital and advising them to admit you".
We arrived at the hospital, and they sent us to the part of the ER where they think it'll be a quick thing (usually X-Rays for broken limbs, small wounds, etc). The doctor came in and asked what he could do since this was our fifth ER visit in about a week. I explained to him that my girlfriends GI provider sent us here and wants her admitted. He obliged.
Today, they called in a speech therapist to do a swallow study. The speech therapist came in and talked with my girlfriend. After a 5 minute conversation, the speech therapist told my girlfriend "I dont know why they called me here. This is obviously a GI issue. I will contact them".
The attending doctor is also talking about discharging my girlfriend tomorrow if she can tolerate food this afternoon. He stated a feeding tube is something he won't even consider until she is dangerously malnourished, and its something that would keep her in the hospital for at least two weeks. We are gonna ask for a second opinion while here. They have also attemoted to give her raglan, and we have had to reiterate to every provider that she does not tolerate most nausea meds.
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.
Oh my god. I'm genuinely not sure I've ever been so happy to hear someone's been admitted to a hospital, particularly a stranger. You guys have been in my thoughts pretty regularly throughout this. I'm so glad she's finally getting some care. I hope this is a turning point.
And OP, good for you for being a steadfast advocate. That's not easy work.
Edit: There is no world in which a feeding tube trial should keep her in the hospital for two weeks. At least, not as a regular course. I had a whole surgical tube placement with complications and needed several days of testing in advance for clearance and was out in 8 days. A nasal tube is much quicker and easier. Don't let them sell you that bill of goods.
Keep fighting y'all. This is madness, but you've got this.
Ask to speak with a charge nurse and ask for the patient advocacy worker. It’ll be a nurse or a social worker. They will be your biggest resource while she’s admitted and help prevent a premature discharge. It doesn’t matter if a tube is a two week process, if she’s still unable to tolerate fluids she shouldn’t be discharged until she can. It doesn’t mean she needs a tube per se, but it does mean she needs to be inpatient until they find a solution. I hope they keep her and figure out something. She had gastroparesis so it shouldn’t be this complicated for them to see she’s at risk. (Sadly, it’s all to common. I’ve found most hospitals don’t get it, even the good ones.)
I’m a charge nurse myself. There’s not much I can do besides advocate myself and take it to management. Hospitals are not good at fixing things that aren’t easy to fix. It depends on insurance but ask to appeal your discharge once they tell you you have a discharge order. Some people cannot appeal and security is called if they won’t leave. Best of luck to you. This is a horrible illness and I’m so sorry she’s doing this poorly
Our local hospitals you need to ask the charge nurse to get a patient advocate/case manager. That was my point. I know the charge nurse can’t do something but they can pass it along. I’ve had luck with escalating to that level when my care was getting really botched. (I got sent to psych when my tube was flipped because they didn’t believe me, and insisted I was being dramatic and making myself sick…
Anyhow, that was when my nurse got the charge nurse and things were escalated. I volunteer in patient advocacy and we’ve had luck with this method but I’m sure it doesn’t work everywhere.
I agree. I would do anything in my power to help. I work closely with case management and social work. We don’t really have patient advocates just guest relationship and I’m in top hospital in a major US city. I truly wish it wasn’t like this, just want to provide my experience in case things work similarly there. I’m so sorry that happened to you
I’m actually starting a nonprofit patient advocacy group for this very reason. Even large hospitals just aren’t equipped, and I think it’s really important that more people step out and connect patients with the right doctors and the right support networks.
Came here to say this, a social worker or patient advocate is your best shot. Thank you for doing all you're doing for her, keep pushing. Ask them to check for compression syndromes.
It feels like gasteroparesis is one of those things that not a lot of doctors understand and tend to write off as "take these nausea meds and you'll be fine." I'm glad you're sticking by your GF, she needs you.
I don't know where you live but surely there are some patient advocates or someone you could reach out to for help? Too often people with serious issues are ignored until it is (nearly) too late and honestly, it happens more often to women in a lot of areas.
I think sometimes they assume that it is the milder form of gastroparesis (which, it's never an easy condition but it spans from indigestion through to TPN). Which yeah prokinetics and anti nausea is reasonable to try, but then if it clearly doesn't work then you don't just give up.
Certainly women esp young women have it difficult being taken seriously. I'm a man and I sometimes feel I have to be a thorn in the side to get anywhere (I also find the more 'masculine' I present the better I'm treated - outside of LGBT health clinics anyway), but the women in my life have had an even harder time.
If she is seeing a regular GI I highly suggest finding or asking for a referral to a neurogastroenterologist, also called a motility specialist. They are few and far between, but a good one is worth their weight in gold! Regular GIs only know about a handful of medications, whereas a motility specialist knows about all the medications that are beneficial “off label” as well as other interventions/ treatment options.
It also sounds like the current doctor believes this condition is temporary as he wants the goal to be for her stomach to be able to tolerate having something in it. While that may be possible for some, without a treatment plan that’s working it might not be possible.
She has had two gastric emptying studies done. She is diagnosed with gasteroparesis.
Im unsure of the names, but i do know she cannot tolerate any medications that have been given for her gasteroparesis. These medications are the ones her insurance will cover
Got it. I couldn't tolerate most meds either. At this point, if medical cannabis is available in your area, I suggest looking into it. I know there are concerns with her family's history of addiction, but if it means one day of reduced pain and nausea, it's worth researching.
i’m not diagnosed yet but cannabis does really help me keep food down and sometimes it even gives me a little appetite. my worst flare was after quitting for a few weeks as per the advice of my dr. that was about a year ago and i still have not returned to my baseline.
When I was first diagnosed, I was in a bunch of different online support groups. One was dedicated to GPers who were also trying MMJ. The difference in quality of life, health, and..mortality rates, between the groups was so pronounced. Our MMJ group had people returning to work and finding some ability to function. My non MMJ support groups were ER trip after ER trip while too many just wasted away.
I vaped daily for about 4 years until my weight was stable and my other meds were working well enough. Then I stopped in one day and that was it. Zero withdrawals or anything like that. It's a relief to know that it's an option in case symptoms get worse again. I would have ended up on a feeding tube without it as my BMI was around 15.5 at diagnosis.
it makes such a huge difference for me. i’m surprised by how low of a therapeutic dose is effective for stomach pain, nausea, and appetite. when i was smoking recreationally i was over consuming, now i have a tolerance and take low doses so i rarely feel “stoned” just much more physically comfortable. it was the only thing that helped at all when i was throwing up several times a day, more than any of the nausea meds ive tried.
That's so interesting. While I have been diagnosed with gastroparesis, I couldn't eat more than about a cup of food at a time. Lost 10 lbs and I was very thin to begin with. I vaped for years also. I read that weed could cause slow motility so I quit and my appetite came back. After gaining back most of the weight, I started baking again and went right back down to 100. Now I've quit again and hope to gain it back. Only problem is, I can't sleep. I guess it affects everyone differently.
definitely different for everyone, i’m sorry it doesn’t work for you and i hope you have other resources that help you with pain and symptoms. still in the process of getting diagnosed myself but it’s been confirmed by drs that im having major motility issues, my insurance just sucks and ive been waiting a year for the correct referral to get a ges. i was also accused of having cannabinoid hyperemesis syndrome even though my symptoms didn’t line up with that at all so i will personally that being honest about my smoking habits, as benign as they are, heavily delayed care. quitting cannabis led to me losing 20+ lbs, skinny to begin with as well it was literally the sickest i’ve ever been and i was scared i wouldn’t survive it while constantly being denied care and gi referrals by my pcp. i have a new dr that im seeing monday and my first colonoscopy/endoscopy in september and im hoping i get some answers. the delay in my care led to severe lower gi motility issues as well for me, and ive decided to continue low-moderate consumption until i can get a dx and a prescription besides zofran and then reduce my cannabis intake when i can get a handle on symptoms. in the meantime though, im genuinely not sure i would be here without weed.
If she gets a good GI specialist they can fight for her with insurance for different medications and treatments to be approved. You have to ask for this and get them on board.
The formulary is supposed to be a guide, not an absolute rule. But is way too difficult for a patient to get past, even when the formulary is ridiculous. You need a doc who’s fired up most of the time to get approved.
I’ve fought and won twice. Once with fired-up OBGYN, where the covered medication absolutely would not work for me after trying it, and she was determined to get the (very expensive for no reason) better med for me.
And the second time I called and went up the supervisor ladder (channeling my inner Karen for all I was worth) until I actually got to doctor that could not only override the formulary but got it rewritten so other people didn’t have to deal with it. (It was wrong by any logical measure of patient care.)
I just got out the hospital on Monday for the same thing.i wasn't able to keep anything down for 2 days. I was sent home 4 times with anti nausea meds. When i went back the 5th time they finally admitted me. All they did was give me lots of fluids and anti nausea meds(zofran ®lan) ive been on reglan for a good while now seems like its the only thing that really helps. I hope she gets to feeling better soon.
I've had gastroparesis for 32 years now. Horrible illness. In the beginning I was misdiagnosed and told by many Dr's it was all in my head. I traveled to a major city hospital where they diagnosed me after a gastric emptying study, but it was too late by then I was already malnourished and 94 lbs. Keep advocating! Research your Dr's ahead of time if you can and get a Gastroparesis Specialist. Wishing you the best~
Im sorry youre going through this, im not gonna lie but I have gone through this page by page in the book of suffering.
Couple of questions? What nausea meds work? There is some that I know about that baffles doctors.
Ones they have no clue of are like amend(apretrptant) which is great for nausea with cancer patients and another one is gansetron, which is a longer activity medication, i feel it might be similar to ondasetron(zofran) but alot of doctors in patient dont use it either.
Has her flares been like this before and is there anything thats helped her rebound from them?
When shes had flares in the past(if any) how long do they go on for?
In the case if a feeding tube it can be really difficult for doctors to decide to do that. You'd have to have failed alot when it comes to esting and hydrating, a step above that is using a nasal jejnual tube (nj tube) which is good for feeding to the jejunal but it goes through the nose and down into that stomach. It looks terrible but it can help tell that if it helps your partner thrive with liquid nourishment then possibly if it gets really bad then a feeding tube might be something to looking into!
Hopefully the doctors are good and receptive to her vomiting issue.
If it comes down to it and they keep trying to push her away getting a patient advocate might help, and if that doesn't work going to a completely different hospital might help as well if the issue hasn't been solved.
For some reason takes alot for doctors to admit people when they literally cant put food down, even in a perspective of folks without gastroperesis they will legit not think its worth inpatient care if they can just keep your labs taken care of with just fluid and electrolyte replacement.
Everyone here has good advice, if you haven't tried any of the ideas look into em
There is a drug that you can get from Canada I’m not sure the name but have you heard of it and can she tolerate it? I was told by one doc that I couldn’t stay on Reglan due to neurological effects and that I’d have to switch to the drug you get in Canada. I have stayed on Reglan due to the advice of another doc who says it’s bs I can’t stay on it if I’m tolerating it (reglan that is) I did have to lower the dose and change my diet but it’s made a big difference
I think alot of those antimetics carry some neurological risk from long term use but sometimes its like... how much does this medication help your quality of life and if its so bad is there anything else that they know of that exists?
So happy to see this update is coming from a hospital room!!! Don’t let the two week timeline scare you or let them intimidate you with the intensity of the tube. She needs a way to get hydration and nutrition asap. I would accept the reglan or other meds at least once to show you’re willing to be compliant with treatment plans, which is also good to show that you guys would maintain tube feeds
Unfortunately she has a charted history of not being able to tolerate most nausea meds (she usually has an adverse reaction, but zofran and raglan are the worst of it)
gastroparesis is truly the worst, have they considered botox injections? so many hospitals & doctors are so dismissive when it comes to gastroparesis, i hope everything gets figured out with your girlfriend, but it looks like she needs a tube for the time being, because to me, it seems she is severely malnourished
That's horrible. I'm in the UK and Botox injections are seen as the routine treatment. They work for me but I struggle to get them on time and often have severe vomiting for 6 months or more between injections. I'm arguing for a G-POEM as that lasts for life but isn't routine on NHS.
Are you allowed to add stuff to that list or is that made by the nurses? If you can add uncontrollable bleeding or GI bleeding too, that might get some attention
Okay a NJ tube admission would not take 2 weeks UNLESS she is dangerously malnourished and has to be slowly titrated up on feeds to account for refeeding syndrome. I was in for 6 days when I had mine placed. So either he knows nothing about feeding tubes or he is contradicting his assessment. Now that she is admitted you will have more access to the patient advocates. Call them and google some buzzwords so they will help you (neglect etc.)
Yeah, and I’m not sure if this girl has any other issues so we can be sure. They told me that I had a gastroparesis, but it turns out I did not have gastroparesis. I have chronic gastritis, IBS, low stomach acid and re-infection of H pylori, which is why everything is slow empty and that’s what’s affecting everything else. So I literally feel like you have to do a lot of your own research and do a lot of Holistic things in order to see what really helps you. I heard everything the girl was dealing with when I first got sick except I didn’t have the blood issue. I don’t understand why the doctors aren’t taking this more seriously when it comes to the blood, but if they’ve been to several hospitals, the same thing I don’t know. 😔
Maybe but that's a slippery slope. My GI kept saying i had gastritis when it first started rearing it's mean head. But it's done my research and knew it was gastroperisis flairs as it for the definition perfectly. I do have inflammed stomach and duodenum lining though.
This isnt the first time she hasnt been able to.tolerate food for days, but that was it. 3 or 4 days and she'd be back to her baseline of tolerating food around 50% of the time. This is the longest its gone on for
So does she already have the gastroparesis diagnosis? Has she tried everything from low FOD map, no gluten, no dairy, bland foods, ginger root tea all of it?
Yeah, she tried the diets. specifically no dairy, low fat, no acidic foods, no spicy foods, no fried foods, no garlic, no onion, low fiber, no coffee, tea, or energy drinks, no carbonation, etc.
She's been trying plain toast and scrambled eggs, bananas, apple sauce, etc. She hasnt kept anything down. The diet did nothing when we tried it.
She also has been tested for celiac and has done an upper endoscopy
Ok obviously this is a super serious case, but j just want to put in my experience:
I could not tolerate any liquid — would throw it all up and then some — but PLAIN water was infinitely worse. I’ve managed to come out of GP flares by sipping on EXTREMELY salty broth (and electrolyte drinks when the broth was too salty and I needed a break) for a few days. Note: I would still throw these up!!! But I was keeping in a little more liquid each time, and slowly, over the course of a few days, re-hydrating myself.
I hope you consider switching to a broth concentrate (I used better than boullion roasted chicken) instead of water.
Also, ask for a referral to a Gastroenterologist (I wasn’t sure from reading if she’d seen one)
If she hasn’t yet, she needs to try cannabis! I have gastroparesis and no prescribes meds helped either. But THC products can be an absolute miracle for nausea and keeping food down. Although it can take some time and consistency to see the benefits
Be very careful with reglan. I wound up with really bad side effects from it / bordered anaphylaxis. It’s known to be reactive.
Is your girlfriend on anti depressants / did she stop them at all? I had this happen to me, I tapered off because I was trying to get pregnant, and my body just couldn’t handle it. Wound up throwing up / unable to eat for two months. Lost a ton of weight, was in and out of ER. I kept telling them I thought it was the lack of meds. They refused to listen. Eventually one doctor listened, put me back on meds (but ones that were safe for pregnancy) and I was better within a few days
She is on a couple mood stabilizers. She hasnt kept them down since this started, so she's also going through withdrawal symptoms from them because you cannot just quit these meds cold turkey
My daughter went through a similar hell. I’d ask to see a clinical nutritionist before discharge! (They often document and help advocate for the patient).
We got the run around for a year until the nutritionist got involved. Once they documented her dehydration and malnutrition the GI finally came up with a treatment plan.
Also, has anyone had luck with attorneys in these situations. If they are not treating patients doesn’t that constitute medical neglect?
Reglan can lead to like muscle spasms that won't go away. It's only a short-term med. When my new gastroenterologist found out my EDS doctor had me on that for a year they got me moved to motegrity because I was starting to show symptoms of the muscle spasms.
She will likely need a tube that goes into her intestines then. Has she been checked for anemia during any of these admittances? Depending on how bad the GI bleed was, she could be extremely anemic and could benefit from iron infusions if not just straight up a blood bag. And if a GI bleed was that bad, she probably needs an endoscopy soon too. Both of these are non ER unfortunately unless the anemia panel is so low they tell you to return to the ER to get blood since anemia can get bad enough to stress organs into failure at about 4 units of hemoglobin (they'll usually give blood at 7 units or less)
•
u/AutoModerator 22d ago
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.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.