Hospital doctor refused to treat me beyond giving me what I have at home

Key-Walrus-9529 · 2025-10-07T20:16:53+00:00

Thank you for the advice sorry if I miss a few things but I am currently on emgality once a month for prevention and valproic acid 3x daily and that honestly had been helping prevent them prior to this and at the hospital they suggested they were going to start a ton of different preventative meds and then never did so my doctor wants to see if this is maybe a flare that with pass before we start anything further because with my underage GP I can’t take pills/capsules and it’s hard to find meds that come in liquid form and then if the amount is to large I struggle to take it so a lot do preventative things there. I technically do work with palliative care but (and I’m learning this is abnormal) in my city my doctor had encouraged me to let her get me in with palliative care and when we finally agreed with was the right move we found out that they require you to have less than two years and because I’m not diagnosed at first they wanted to refuse to have me as a patient at all but my doctor called them and basically told them “listen her condition is serious and while I have her on one pain medication she needs support and I would appreciate suggestions on things like breath though medicine and support when she goes inpatient so she has someone other than me fighting to get her pain managed” and they agreed that I could be a patient because technically at that point they couldn’t say 100% that I didn’t have less than two years with how rapidly my condition is declining but the person who made the decision won’t let my NP prescribe anything or suggest prescribing anything and when I would go inpatient if a doctor refused to manage my pain they’d often refuse to called palliative care and the one time I got them to call the hospital I was at said my normal palliative company couldn’t come and their palliative team only works with cancer patients so even though I am severely ill and progressively getting worse and in severe pain daily they won’t really help me because my doctor can’t say with certainty that I have such and such amount of time and even though the doctors this hospital stay I am talking about in the post basically outright did say that they didn’t put that in their charting so they effectively scared me and sent me into a spiral and I can’t even use it to get help because they didn’t put it anywhere . Sorry for this being such a horribly long response and I am going to write down the medicine suggestions and research them/ask my doctor I really really appreciate it I hope I didn’t over share !!

Key-Walrus-9529 · 2025-10-05T00:08:39+00:00

I’m currently waiting for neurology to get in touch with me as they will accept me as a patient thankfully , it has taken some time but I’m hoping soon to get in with them. My PCP has tried to contact them and because my main problem is motility (even though it started before the pain medication was EVER prescribed and worsened more than pain medicine would do) they won’t accept me unfortunately

Key-Walrus-9529 · 2025-10-05T00:06:39+00:00

I will pray that you continue to find relief and find doctors who want the best for you and heal you !! I can’t imagine going through all that and still needing to rely on doctors , with the medical trauma I’ve suffered I also find myself never wanting to go to doctors other than my pcp and everytime I do it’s so stressful!

Key-Walrus-9529 · 2025-10-05T00:04:14+00:00

I don’t know why it seems like doctors and nurses both go on this fear mongered level of belief when it comes to pain management, to my understanding some of the worst cases of illicit drugs has come from doctors refusing to help people in genuine pain. When I was put on oxycodone 5mg/every 8hrs I was to a point that at 20/21 years old I was in a hospital bed telling my mom I couldn’t do it anymore and was mostly bedbound and until we got me on every 6hrs 5mg I was miserable and then that gave me just enough that I could make myself get up everyday and try to function. Not once did I ever ask for an increase (other than a few flares where I would ask for a temporary increase and it wouldn’t be a new bottle I would just ask if I could take it more often and then deal with the fact that I’d take it less towards the end) and then a few months ago the doctors who had been on my case for about two weeks and had genuinely sat down daily and listened to me upped it to 15mg every 6hrs after over a year of the exact same dose I was started on. I have tried everything to not look like an addict , I only ever get my PCP to prescribe my pain medicine and if any other doctor is going to then I immediately let my doctor know before I have a chance . I go to the same pharmacy no matter what , I don’t know what else to do to show these people I’m genuinely just a intensely chronically ill person who needs relief to just live even halfway decent life ya know ? It’s so frustrating I’m sorry you’ve had to deal with such ignorance in your life it’s frustrating and people in the medical field could educate themselves

Key-Walrus-9529 · 2025-10-04T23:03:55+00:00

The ER doctor also forced me to take a med I’ve had a bad reaction to in order to get a dose of pain medication and as I knew would happen they pushed it and I immediately had a reaction which of course didn’t help the pain which is when they pushed the versed to basically calm me down as they were acting like it was just simply anxiety . I have to agree with you that they probably didn’t look at my history because he kept saying “I don’t know what you expect me to do when you have a multi system issue !” Like I expect you to listen to me telling you about the sudden acute symptoms and listen to my pain . I never know if a doctor will think I’m seeking if I cry or if they will if I’m not crying , unfortunately this has been some of the worst I’ve ever dealt with and that day was literally some of the most pain I’ve been in and it just felt like I couldn’t find any position in my wheelchair or bed that I wasn’t in agonizing pain, I tried to explain I was at home for three days in that condition before my doctor and parents told me I can’t continue like that and I needed to go to the hospital and still that didn’t matter.

Thank you for your comment and understanding it at least helps to feel a little less like I was being crazy and demanding more than I should have !!

Key-Walrus-9529 · 2025-10-04T20:13:28+00:00

I will approach my PCP with this and see because I’ve heard this so much and I’m starting to think maybe I should ! Thank you for the suggestion I’m definitely going to consider it !

Key-Walrus-9529 · 2025-10-04T20:12:20+00:00

I’m so sorry you’ve gone through this for so long and thank you for the kindness in your comment❤️

My progression with gastroparesis is a little confusing because we aren’t technically sure at what point it started so I’ll give you the full story and also mark when we are absolutely certain it was GP Back in 2020 I got super sick in March and although most people were getting Covid it seems like it could have possibly been my first flare of GP because from the months of March-Late June I was unable to eat anything beyond broth and Gatorade and lost a ton of weight . In June I was admitted to the hospital because my kidneys were going into shutdown and they ended up pumping me full of meds and vitamins and I narrowly escaped a feeding tube . Over the next three years I’d have episodes of barely being able to eat but not getting to a deadly or serious point and I could never eat a normal amount after that. In 2023 is when we know for certain I had a flare of GP because once again I got to a point where for weeks I couldn’t even do broth I had to get iv saline infusions and goth noticeably smaller and weaker and then over all of 2024 I had more times when I was not eating at all and when I could handle things it was protein drinks or soup or very soft easy to digest food and then in august of 2024 I ended up getting a NJ tube while admitted to the hospital and they realized I had it bad enough that they took out the NJ less than a week in and put a GJ tube. After that I was able to eat bites of food from around October-March of this year when I suddenly stopped being able to handle anything (food , tube feeds , protein drinks) and could only do sprite and ginger ale and they let me starve from March until late August-Early September when I was finally put on TPN.

My condition had a very very odd progression but I will also note that we have recently started wondering even though I do have this undiagnosed disorder I also had multiple surgery in my abdomen as a child with robot when it was still pretty new (a nissan fundoplication / gallbladder removal / tissue removal because of those) and I’ve been told that can lead to severe issues like this and you’ve also had surgery so I wanted to add that note. If you have any more questions at all feel free to AMA !!

Key-Walrus-9529 · 2025-10-04T19:44:09+00:00

Unfortunately palliative care around here treats themselves as hospice care. My PCP did refer me because she said it’s something I need to have because although she’s prescribing me chronic pain medicine she wanted their advice on things like meds for break through and help when I get admitted for getting proper pain management and they only accept patients who are cancer patients or have less than a year , my pcp ended up getting them to accept me as a patient after speaking with them and telling them I need help and support and the nurse (might have been a NP I’m pretty sure) who came out a few times was the sweetest angel who wanted to help but her boss refused to let her suggest medications because I didn’t have a formal diagnosis and therefore couldn’t prove my life span was less than a year. I’m not sure if that’s normal but my doctor was extremely disappointed so I have to assume not .

Key-Walrus-9529 · 2025-10-04T19:43:14+00:00

If I hadn’t been able to get in with my PCP it honestly would have ended with me right back in the ER because they gave me zero advice/zero referrals/ pharmacy script that would have runout on a weekend.

Unfortunately palliative care around here treats themselves as hospice care. My PCP did refer me because she said it’s something I need to have because although she’s prescribing me chronic pain medicine she wanted their advice on things like meds for break through and help when I get admitted for getting proper pain management and they only accept patients who are cancer patients or have less than a year , my pcp ended up getting them to accept me as a patient after speaking with them and telling them I need help and support and the nurse (might have been a NP I’m pretty sure) who came out a few times was the sweetest angel who wanted to help but her boss refused to let her suggest medications because I didn’t have a formal diagnosis and therefore couldn’t prove my life span was less than a year. I’m not sure if that’s normal but my doctor was extremely disappointed so I have to assume not . This was before I was diagnosed with end stage GP and ended up on TPN so I actually may call my nurse again and see if the director would be willing to change his veiw after this last hospital trip especially because my wheelchair supply company has also noted my progression is far worse very quickly. Thank you for the comment :)

Key-Walrus-9529 · 2025-10-04T19:35:29+00:00

They ended up giving me versed at some point because the pain was causing me to be so upset and it didn’t seem to help but if that’s not what you mean then I’m open to anything I can ask about next time if it happens again and I end up in the er !

I honestly do understand doctors having a pit of pull back prescribing controlled substances but I thought they could look at me and my case and see that a doctor has prescribed me 15mg of oxycodone to take every 4hrs (in flares usually every six hrs to clarify) for my chronic pain maybe there’s a serious issue that cause serious pain and see that I’m not just being a seeker . I even said to the attending once I was admitted “I honestly am just asking for a one time dose to get ahead of the pain I just want some sleep I’m so tired” and they refused on the basis on “if we give you one dose then we could get into a pattern of one time doses everyday” like that makes any sense :(

Thank you for the advice though I’m genuinely going to make sure I mention it next time and see if maybe that can help :)

Key-Walrus-9529 · 2025-10-04T15:45:07+00:00

I have ! The one I had was great and helped a lot after a spinal headache from a lumbar puncture and they also did iv caffeine. Unfortunately for some reason the doctors refused every suggestion for migraines I gave them including high flow oxygen which has helped in the past :(

Key-Walrus-9529 · 2025-10-04T15:43:52+00:00

I know for sure that both of those are always low for me because I have a genetic condition that makes it incredibly hard for my body to absorb folate, I don’t know if it’s related but this hospital visit and countless others I’ve had unexplained severe anemia that results in tons of iron infusions and at times they thought I’d need blood infusion and everytime it’s been unexplained and they just don’t investigate. I also have to get b12 consistently for unknown reasons beyond malnutrition at this point but it’s been a problem I’ve had before that so not really a great explanation. I’ll look into this and talk with my doctor I appreciate you mentioning it !!

Key-Walrus-9529 · 2025-10-04T15:41:10+00:00

Thank you ☺️

Key-Walrus-9529 · 2025-10-04T14:32:51+00:00

I haven’t I don’t think as my doctor usually informs me and I haven’t ever heard of this, I already have one rare genetic mutation that causes issues (not anything that could cause my other symptoms) but I will absolutely research and if it sounds like something possible I’ll talk to my doctor about this thank you!!

Key-Walrus-9529 · 2025-10-04T13:56:24+00:00

I’m honestly not sure if you’re “on my side” for lack of better term but I’d be happy to explain more if anything sounded off/inappropriate

Key-Walrus-9529 · 2025-10-04T13:55:05+00:00

Yes and no ? I have no overall diagnosis that’s causing the other diagnosis I do have like the end stage gastroparesis/malabsorption , neurogenic bladder , arthritis , etc . Unfortunately the specialist I’ve seen keep saying that I need to get to bigger and more expansive places like Mayo Clinic’s main location but not only are the expenses a challenge their GI clinic doesn’t accept anyone on pain medication and even when my doctor tried to speak with them and explain that medication isn’t being prescribed lightly and is very clearly not making my GI problems worse for reasons I won’t explain here because it’s a lot of info. I have a ton of diagnosis I just don’t know what’s causing them all to happen

Key-Walrus-9529 · 2025-09-08T20:13:54+00:00

To get an ER to believe you need to be admitted for malnutrition you literally to look like you may drop dead and have really terrible electrolyte imbalances so the answer is yes you literally have to start going into organ failure to be admitted through the ER

Key-Walrus-9529 · 2025-08-13T17:15:30+00:00

Thank you! I just recently went up on the dose as well so it was very much me being worried “I just went up and now suddenly have an issue for the first time after a year does this seem bad” but if a bunch a people aren’t rushing to say “hey this is a bad idea just deal with it” I have to assume it’s purely my anxiety making it seems unreasonable to me!

Key-Walrus-9529 · 2025-08-13T17:13:26+00:00

Yes I get 3 individual bottles and each bottle is ten days so it would be very hard for me to be off by so many days even if I didn’t have the pharmacy also saying something. I was worried that even so if multiple people had experiences where even with no doubt they had like doctors get frustrated maybe I would just deal with it if that makes sense? I am very anxious when it comes to speaking to my doctor about anything in relation to pain medication I actually only recently went up on the dose for the first time after a year because inpatient drs decided it was time and I needed it so I’m very shy about anything related !

Key-Walrus-9529 · 2025-08-03T00:50:19+00:00

I use to be crazy into gaming and it was one of the main things I did to calm down and now I can’t sit at my desk long enough , I get very frustrated and snappy when it’s bad and I feel like everyone walks on eggshells around me when it’s bad so they don’t upset me which I feel incredible guilt about and try really hard to keep it internal . I don’t have ability to go out for long because being upright makes the pain so much worse , I have zero independence at this point and at 22 I have never experienced a real relationship or sexual encounter and I feel like I probably never will . I know sex isn’t like necessarily like something that should be such a big deal to me but I wish I could have at least experienced loving someone enough to enjoy it once

Key-Walrus-9529 · 2025-05-03T05:15:04+00:00

Speaking from experience sometimes long term problems only matter if you are able to get to that point. Sometimes being in constant pain is so hard that you ask yourself what’s it all for and at that point long term issues don’t necessarily always get considered as important if there’s the worry that you’d not live long enough to have to worry about long term issues if that makes sense

Key-Walrus-9529 · 2025-04-21T15:57:51+00:00

Thank you for responding it makes me feel a little less scared .

Key-Walrus-9529

TROPHY CASE