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gspfld6

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Reply with quote  #1 
What does one do when ER refuses to treat and your still writhing in pain?  That's happening to me now.  They believe I am drug seeking for the duiladed which couldn't be further than the truth.  It is pain relief I need not a high.
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gary smith
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scooky1

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Reply with quote  #2 
I wrote you a reply and it had so much info but as usual you get almost done and the site goes down and all that was written is gone, don't know why that keeps happening. I know about ER's after 23 yaers of this, but I am not going to write all of that info again just to have it vanish again, I am steve, user name (scooky1) look up what I have written about ER's but I am so tired of the site going some where after I have spent some much time writing.
private message me and perhaps I have some info that may help you
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scooky1

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Reply with quote  #3 
Gary
Sorry for that last post, I just got so frustrated after responding to your question about what do you do when they treat you like a drug seeker. Really not much you can do but it really would help if you h ad a whitness or friend just somebody else in the room. they hate that! and you will see it changes the mood in the room, please read my post about "educating ER Dr's and staff" on the board, I can't tell you how many times they have done the same thing to me. you tell them please it's not over I need more drugs! that hardly ever ends in your favor, at this time you are eather still sick and angry, save the anger it will only set you off again.
if you have anything to knock out with-take it and wait for tomarrow. read what the people who run this site have to say and the members as well.
I try so hard to stay calm when they are doing that to me because if you go off in there that is just amunition for them to do it to you the next time. never pee in the cup for them but anver argue (I can,t pee now! leave the cup in the toilet, try again later etc. maybe they will let it go, if they keep it up ask them what about the blood you just took(that was the first thing did when you got in the room) that should tell you everything you need, RIGHT? the pee normaly they are just looking for THC and a reason to treat you bad and kick you out. so sorry this happend if it is your first time, I'm sorry to say this to you but it will not be the last.b there is so much more to say but
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scooky1

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Reply with quote  #4 
well it happend again, all you have to do is hit the space bar and everything either goes away or what ever you are writing gets posted, I wish you well and again see the post I left re:ER Dr's and staff.
welcome to our unfortunate club and good luck!
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ginny

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Reply with quote  #5 

Steve, I am not sure if you are losing the website or if your message disappears as you are writing it.  Sometimes I keep copying messages so I have them, and in the past I would write the message on an email or word doc and then copy the entire thing.  There is a place on your computer to tap that brings your typing back.

gapfld6-- I am so sorry your treatment is awful.  I hope you did get some relief.  CVSA is working hard for adult treatment guidelines.  For some reason the adults seem to have more pain than the children.  You can request a call to the on call hospital administrator, the hospitals attorney and your PCP or the MD who is treating your CVS.  It is a precarious position to be in the ER and treated so poorly.  After you get better you can make an appointment to outline a treatment plan in case you need this ER again.

Difficult as it is, the best option is for your own doctor to arrange an inpatient admit--if s/he will agree. That might help bring you proper treatment.  With so many hospitals staffing with hospitalists I don't know how often the PCPs orders are followed.  There is a lot of information on this message board that might help you get your needed medications.


Our GI has instructions with her ER to call her immediately when her CVS patients arrive at the ER.  When those orders were not followed she then gave out her cell phone number for the patient to call.  
Please let us know how you are doing.


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ginny CVSA Moderator
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coprhed1165

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Reply with quote  #6 
hi, i may have posted this b4 but IMHO warrants repeating. just some info: 52 yr old female (RN)  with major health conditions, meds, surgeries. i had gastric bypass surgery in 2003 & experienced normal "dumping syndrome" which in med terms for non weight loss folks is called rapid gastric emptying. about 2 yrs ago i start to have major GI symptoms. i was on the puter one night & told my roomate i'm looking up dumping syndrome to read to her - its so strange, CVS popped up - never heard of it & was about to do another search & felt compelled to read the article.....the only thing missing was my name.....now i've more than my fair share of conditions, I immediately recognized 2 defining features...its also stated dumping syndrome as a symptom of CVS along with about 12 others....one would think:nausea is nausea is nausea....NOT...you have sea sick nausea, pregnancy nausea, reg flu type nausea, cancer nausea, med nausea etc...etc....but CVS nausea....WHEW!!!! like nothing i've ever experienced - even after the initial vomiting of food all that was there was white/clear foam that was so thick i had to dig it out with my hand - this prompted my self induced vomiting for relief thats short lived....these retching attacks were so fast, furious & debilitating that i went into an altered state of consciousness - i could not open my eyes or obey commands, muscles flacid - the retching w no muscle tone obviously sounds like growling (as noted in chart) could hear them ask about the growling & what language i was speaking....i heard every word & just spoke to my lawyer to pursue this....here are a few of the comments....she is just faking cause she wants drugs....you are not getting drugs so just stop....you are causing all this yourself...did you give her narcan? is it a stroke or heart attack? is she from a nursing home....you are disturbing me with that growling, i can't concentrate entering stuff in the computer so just stop.....aren't you supposed to be an RN? have some pride & dignity, sit up and get your head out of the bucket....you are causing yourself to hyperventilate, you are acting like my dog when i go to the vet - foaming at the mouth...you aren't getting drugs so straighten up....where is your family - not here - i wonder why (sarcastic), nobody is coming for you, noone cares. actually went into cardiac/resp arrest, turned blue, CPR etc etc....and here i am....at one point while still able to communicate i asked to page house supervisor, asked to be transferred to another facility & was brought AMA & said no, i want treatment not refusing it....i was told i would not be treated without a urine tox screen (dehydrated from 4 days NVD...nothing to give....they manipulated me into an in & out catheter and despite an IV they manipulated me to get rectal meds (train of thought is a druggie wouldn't accept that route).....i'm backtracking a bit by some hours b4 i slipped away....they wanted a urine sample....bathroom down hall....too weak - req assistance, bedpan or bedside commode.... time goes by & by & by so i start yelling for help (no call button, rails up, doors locked....i undo wires & shimmie out the bottom of stretcher & stand up & in comes my male nurse....he says "what are you doing?" i say, i've waited as long as possible so now i'm going to pee right here. he says (sarcastic)...go ahead, pee on the floor, i don't care" and walks out slaming the door behind him. i didn't plan this i swear....i get the puke bucket, straddle as best i can & start peeing, then OMG, i'm unable to hold back the largest dump of my life (LMAO) but i have no toilet paper - great....took off gown, wiped butt, climbed back same way i climbed out - bra & undies...no pillow, blanket or sheet....i wait, wait, wait...door opens, its him....he looks at me then looks down at the bucket full of shit, looks back at me and walks out slamming door behind him....i hear uproar of laughter then the blinds would open close each time and quite a few were even brave enough to make up an excuse to come in & get a closer look. about 8-10 hrs later when i got a room i looked back & the bucket was still sitting there.....sorry TMI.....CVS....besides nausea beyond description is the self induced vomiting - it has a fancy name i can't remember but can be found regarding anorexia/bulimia.....also EXTREME thirst....i can't even express it....they refer to it as guzzle/vomit episodes.....one article cited several hospitalized patients caught drinking out of the toilet....immediately knew this was it. ordered brochure & gave to PCP & bam! diagnosis.ok, so much for my rant but trying to warn others about how this seemingly harmless this may sound, it can be life threatening if combined with other illnesses or happens in high risk groups (young, old, sick)....the 1st words i spoke when revived was...."so, you think i'm faking now ?" talk to lawyer tomorrow. hope this helps somebody....its what i live for (LOL) tanyarn96@gmail.com
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tanya
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scooky1

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Reply with quote  #7 
I read this and am so upset that I am afraid I might get sick again, I can't remember how many times they have done this to me as well, I am so upset about the way they treat us and what they did to you, they have deep pockets and more lawyers than us, please see the post I left re: use our web site to educate the ER Dr's and staff about us. it's only a matter of time before one of us gets/goes over the top.they should not let them stay in the ER for so long, I think they should rotate them out to other parts of the hospital monthly. I can't tell you how many times I have heard ER staff laughing and saying things about me like I am just there for drugs. we can use this web site and all of us to make them stop. your post makes me so mad I want to say bad things! but we must stay calm and try to be above them. if we get togather and go after them as a group I think we could make things happen! I have to stop now before I say something bad, togather we can make things better for all of us. be well, Steve
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Deidre

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Reply with quote  #8 
Hi all. I am brand new here. I am 55 years old and just found out about Cvs. It's been going on for 12 years with me. My experiences at the ER have been a nightmare. Like you I have been treated like a drug addict. (I am of course not!). But I have found that the only thing that will stop it is a shot of Morphine, demerral or diladud. I was Givin multiple shots of Zophran this last time even after telling them it does not work..not even a little. I have an appt. With a G.I Dr. This afternoon. I'm so hoping to get his attention on this, I did alot of research and printed out several articles for this dr. To at least look at. I usually stay at home and let it run its course 10 days, a couple of times. Does anyone have any advice on how to approach my Dr. With this? I was super excited to have found this message board. I have felt shame, severe depression and hopelessness until I found what I had was an actual illness.
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ginny

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Reply with quote  #9 
I am sorry you are having such a difficult time Deidre. You have been tested to rule out other conditions?  Often the ERs are more receptive to the term "abdominal migraine"-- especially if you require pain medications.

For your appointment, maybe bring a copy of the Empiric Guidelines, the NASPHGAN (pedi but the adult version is being research right now), contact information for the CVSA, and ask if your GI would conference call with a CVSA Medical Advisor.  I am not sure how quickly the CVSA office can get a Professional Pamphlet sent to your doctor but I assume the office has these in electronic form to be emailed over to the doctors office.  You can request a patient pamphlet as well.

The CVSA newsletter, in particular either the last one or the current one, has all the updates on the adult research currently underway.  There are many involved in this research from outside the CVSA community.

Good luck today.  

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ginny CVSA Moderator
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ginny

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Reply with quote  #10 
Steve, I am on a MacBook and if I scroll to the top of the page under Edit, I can click "undo typing" to make everything come back.  On a Windows computer, there is something similar, I just cannot recall what it is called.  I know how frustrating this is and sometimes I will use word to write the message and then cut and paste to the MB.
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ginny CVSA Moderator
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wynnak

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Reply with quote  #11 
Deidre,

It sounds like your doing everything that I would. Take your history, meds you have tried. The printouts, most definitely. It is a little late, but I would have contacted the CVSA office for a brochure for your doctor as well. Ask the GI about starting a preventative. Don't give up hope. We went through several doctors before we found the right fit for us. Or more aptly, one capable of treating the level of my sons's case. Don't stop trying. Start a preventative. Reinforce that Zofran doesn't work for you and ask what else is available as an anti-nausea/anti-nausea. If pain is your main symptom, ask what can be done for that. I would NOT go in and tell them all that works for you is morphine and dilaudid. Let them come to their own conclusions. Tell them that the abdominal pain is the main factor. Or that the vomiting is and see what they suggest. IF the zofran is their first go to.. then tell them that your pretty sure you have built up an immunity to it, or it doesn't work for you at all.. Have the discussion with them. We have been seeing ours long enough now that we have tried and given very frank responses about the efficacy of the medications. This is a new to you doctor they may need to see you and your episodes a few times before they will be supportive of the stronger pain meds. That is unfortunately the way the medical world has become. But I think it is important to work on the basics first anyway. Make sure they are familiar with CVS. That you feel they listen to you. That they are are going to get you started on a preventative. If they have suggestions for you. A good Doctor should do his own evaluation to confirm the CVS Diagnosis. 

Let us know how it goes.

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Blynda
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Deidre

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Reply with quote  #12 
Thank you for your quick response. I just met with a GI specialist and I'm very hopeful. O have had several cat scans x-rays. The only thing found is a hianal hernia, and possible tear in my esophigus.I don't experience heart burn with most episodes. The surgeon will be going in to look further in June. He was aware of CVS and seemed to not dismiss that as what's been going on. I am more hopeful than ever to finally know what kind of possible preventive treatment may be tried. It's been 12 years of pain and shame and severe depression and anxiety. So very thankful to find this forum and to know I'm not (completely crazy). I would like to know if many of you have experienced severe back pain with this? The nausea..and the back pain is unbearable. Don't always have back pain but most of the time I do. I can't lay still..it's agonizing.
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wynnak

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Reply with quote  #13 
SO glad that you felt that the appointment went well. They did talk about a preventative for you then? Good.

I have seen several people mention back pain during an episode. You can use the search option to look for prior threads that discussed this. Just click the search tab and type back pain on the search line. My son experiences the abdominal pain where he curls into fetal position.. so I can imagine that back pain would be just as awful.

I hope the new treatment plan will work for you. You'll have to let us know of course.


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Blynda
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Deidre

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Reply with quote  #14 
I was first diagnosed with pancreatis, from there low potassium and for the most part for the several years..dismissed and sent home still vomiting. My next goal is to have my GI put some sort of Note: in to the ER so they will understand what's going on. I rarely go to ER and just wait it out at home. The last few times have lasted exactly 24 hours, which I'll take. As I have had it last for up to 10 days straight. My biggest worry is my heart.. but the shame I go thru at the hospital when I am already so sick is truly degrading and no promise of relief. Most of the time I would just rather wait it out..as it stops as quickly as it started when it's finally over. Such a sad thing we all have had to go thru, And again, Thank you for listening and for your advice. Hoping longlasting wellness for All.
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ginny

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Reply with quote  #15 
Your message is one that the ERs need to hear.  Would you send that message to your doctor and your ER?  The thoughts of staying home violently vomiting and challenging your heart as you dehydrate is truly scary and very impactful.

I think if I were an ER professional and read what you wrote, I would very quickly find my empathy.

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ginny CVSA Moderator
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