If you are one of us that is unlucky enough to have developed Pancreatitis it’s likely that at some point or another you are going to have to deal with an ER (emergency room) visit.
Now, first let me say that I understand that ER’s can be very busy places. Their focus is dealing with stabilizing patients that have all types of trauma. So the Doctors there have to know a little about a lot of different conditions
But it’s also unlikely that you are going to ever run into a Doctor there that really understands Pancreatitis. In the more than 23 times I’ve had to go to the ER in the last 5 years I’ve only met one Doctor that had experience with Pancreatitis.
ER Doctors are used to dealing with emergency and urgent care. The goal is to quickly identify and diagnose a problem and then treat it. Most of the patients that these Doctors see are from car accidents, wounds of various types, and things like heart attacks.
So when you show up complaining only about the pain of Pancreatitis in your tummy it throws them off their game. Many times they are unsure of what they should do with you.
Part of the problem is that if you’ve had Pancreatitis for very long you have a lot of experience. You could very well know more about this disease than the Doctor who is treating you.
You know that you are there for pain treatment when you have a flare up and this can cause other problems.
Contents
I think that there is actually a stigma about this disease. So once you get into the ER it’s extremely likely that you are going to run smack into another problem.
You see, many Doctors and Nurses that are going to firmly believe that:
If you get branded with either of these two things getting proper treatment and pain relief for your flare up is going to be next to impossible.
Now, whether or not your flare up is alcohol related it still shouldn’t matter. It shouldn’t be a factor in how you are treated. But it’s something that you are going to run into there. You are probably going to be asked over and over and over again whether you are a drinker.
Sometimes I feel like I should put a sticker on my forehead that says “not an alcoholic!”
I actually got mad one time. After he attending Doctor kept asking me about whether or not I drank that I told him to do a blood test to see if there was any alcohol.
And the fact that you have been diagnosed and have a history with Pancreatitis should tell them that you are seeking help with real pain and not just drug seeking, but that usually isn’t going to make a difference to them once they’ve made up their mind.
Of course ER’s can be very busy places and the Doctors can be dealing with other patients that have life threatening critical injuries.
They also have a limited amount of rooms and staff to deal with the problems that come through their doors.
So when you come in complaining of a sore stomach it seems that you may quickly get regulated to the bottom of the list as far as getting the attention of the Doctors and Nurses
One thing that I have noticed fairly recently is that the Doctors are put on a clock when you come in for treatment.
In the ER where I go to they have 4 hrs to either discharge you or move you into the Hospital.
I assume this is to maximize resources and staff but if you get put on the bottom of the list when you go into the ER already I think that you are not getting the best care that Hospitals always promise if you are getting rushed out the back door.
Recently I was in the ER trying to get some help for the pain of yet another flare up and was put on an IV with minimal pain and nausea meds while they ran tests.
When the blood tests came back showing my lipase levels were at 3800 I received more pain meds for a while but their concern was whether or not I could eat without throwing up so they could release me.
I explained first to the Doctor, then to several different Nurses, that eating while I was in the middle of a flare up was a very bad idea for me to eat but they just kept insisting that I eat something.
Finally they just released me because I had most of the pain meds at home that they were giving me anyway and they didn’t know what to do with me.
Bottom line though is that how well you get treated if you go to the ER is going to depend upon a lot of factors that are out of your control.
There have been times when I was in the ER where I was basically ignored because they had a major accident that brought in seriously injured people that needed immediate treatment. This was understandable and I tried to keep from screaming in pain during the extended time that I had to wait but I kept feeling like my rights to treatment were being trampled.
There was even one time when I was in the ER during the Super Bowl the staff seemed more interested in watching the game than they were in treating me.
But the worst thing that can happen is if you get a Doctor that decides you are just drug seeking and lets you suffer in your room without any pain meds at all.
It doesn’t matter if you have been referred to different Specialists that are based in different hospitals – the Doctors in the ER will automatically think that you are drug seeking.
And I have known people that have done this, going from Doctor to Doctor trying to get more drugs prescribed from each Doctor but with the pain of Pancreatitis you are going to seek help wherever you can find it.
Still, with the current electronic records that are being used this will only raise a red flag when you go to the ER.
That makes the occasions when I have to see specialists in other hospitals for consultation or tests a real concern for me because I know that with the electronic records it will show this to any Doctor that is looking to classify me as having addictive drug seeking behavior.
It also doesn’t matter that many specialists work in several hospitals and you have to follow them to get an appointment or that often times different hospitals will have departments that specialize in different areas.
Some Doctors are just going to look at the fact that you are going to different Hospitals as proof that you are a potential drug seeker. And if they see prescriptions written by Doctors at different Hospitals in your records this makes the problem even worse.
Asking For Specific Treatment Or Drugs
This might be because you have either had allergic reactions to certain drugs or because you metabolize certain drugs faster and easier than others so you get relief faster.
You’d think that the Doctor would appreciate getting this information but that is rarely true.
I’ve had instances where I asked for an IV pain med but the Doctor gave me a pill that I already had at home. If it didn’t work at home, why would they think that it would work just because I was in the Hospital?
But usually sharing any preferences other than allergies with the Doctor will only make them think that you are asking for those drugs because you are seeking a specific high.
Seeing a Psychiatrist
Some Doctors seem to think that if you are seeing a Psychiatrist you can’t be relied upon to accurately tell them about the pain you are experiencing.
The fact is though that recent studies have shown that more than half of the people that suffer from Pancreatitis also suffer from severe depression.
So there may come a time during your battle with Pancreatitis that you look to a psychiatrist or therapist to help you deal with the pain that many time you live with every day and every hour.
Describing The Pain
The first is that pain for a flare up of your Pancreas is a sympathetic pain. This means that the pain isn’t limited to just the Pancreas but can also be felt in other adjacent areas.
This can make it difficult to pinpoint the pain when the Doctor asks because it can radiate to areas other than just the Pancreas. If the Doctor that you are dealing with doesn’t know this he/she might assume that you are faking your pain to get drugs since you are pointing to the wrong area or can’t pinpoint the pain.
The second problem, especially when you have chronic Pancreatitis, is that you can develop a resistance to the pain and actually become so used to some of the pain that it seems normal.
In other words you become so used to the pain that a flare up that would floor a regular person just slows you down.
This makes it hard when an inexperienced Doctor asks you to rate your pain on a scale of 1 to 10 and point to the exact area where it hurts.
And one of the things that the Doctors look for that is a red flag for drug seekers is anyone that says their pain is at 10. But if you’re in a midst of a flare up, at least for me, the pain could really be at a 10.
Being Too Nice
Apparently the thought is that if you are too nice you are trying to butter up the Doctor and Nurse so they give you better meds for your pretend pain.
I can see how a person who was in no pain and just drug seeking might try this tactic.
But if you come in to the ER in pain, have the inflammation backed up by blood test and x-rays, and have a history of problems with Pancreatitis, why should you be put in the same class?
I guess what angers me the most about the problems you have dealing with the ER is that when you are in great pain and go to a place that is supposed to be there to help you that you have to try and remember everything that you should and should not be saying.
Shouldn’t the Doctors and Nurses, who are supposed to be experts, be able to get past their preconceptions of what a few people might be doing to feed a drug habit or drinking too much?
I always try to have a script in my mind to help get me through to the drugs that I need for the pain and nausea I’m suffering from during a flare up.
But you also have to be flexible depending upon the attitude of the Doctors and Nurses.
It actually makes me a bit angry. I only go to the ER for my Pancreatitis when I am in extreme pain and that pain makes it hard to be coherent and try to deal with the Doctors and Nurses.
I don’t know the answer to this problem. But this is why I personally avoid the ER as much as possible. I try to tough out a flare up at home until I can get into see my regular Doctor who knows and understands what I am going through and actually tries to help me.
Living With Pain I'm one of the more than 100 Million Americans that struggle to…
I often wonder if anyone that doesn't suffer from it really understands the immense cost that comes from…
What is Pancreatitis Pancreatitis is simply an inflammation of the Pancreas. There are many causes of…
Pancreatic enzymes are natural chemicals that are created by your Pancreas to help your body break…
An Important Note About My Experience With Pancreatitis: I am not a doctor or a…
Knowing the signs of dehydration is important when you have a disease like Pancreatitis.…
View Comments
The main issue is that ER doctors do not believe that the ER is a place that should treat chronic pain. Especially when they are aware that your PCP or pain management doctor are prescribing narcotics for you. They expect patients to contact their PCP, pain doctor or GI if you are in the midst of having a terrible flair. Of course we all know that its easier said than done, and many times our doctors will tell us to go to the ER anyway. If having this type of unbearable pain happens on a semi regular basis, ER doctors expect that you have a plan to deal with it with your doctors, and they believe it should not include the ER. T
Those of us with CP know that we can experience a myriad of additional health problems other than pain and elevated lipase. I have had infections, surgical complications, ruptured bowel, etc. diagnosed in the ER. I'm not sure what the resolution is to this issue, but my life and number of visits to the ER have improved by having a great pain management doctor who I have worked out a plan with to address all of my pain. If the ER doctor can call my pain management doctor who will confirm my need for strong pain medication.
I agree with your statement that ER's are not set up to work with people that suffer from chronic pain. The problem, of course, is that it can take time to see your PCP and they really aren't set up, in most cases, to treat us when we suffer a flare up. This sort of leaves us between a rock and a hard place when we need help during a flare up.
I have not written my story yet which I will but I wanted to comment on your post, chronic pain create Titus can cause organ failure so there is a fine line between laying at home suffering in severe pain and going to the hospital and not making sure that you're amylase and lipase are not off the charts
I have chronic recurring acute pancreatitis as well as stage 4 liver disease so I can't take certain pain medications like 5mg norco and they say take 1 or 2 if needed for pain. I am not supposed to have that much tylenol in my system i am better off being prescribed 10 mg and being told to take a half or whole one if needed. I was on dilaudid for 3 yrs but my P.C.P. decided I can't be prescribed pain medication from him, I need to see a pain management Dr and I can't find one that accepts Medicaid and if I did find one they said that they don't prescribe anything they do physical therapy. How will physical therapy help chronic pancreatitis? I am so sick of all these Dr.'s last time I went in for surgery I asked for a specific pain killer and the nurse said oh you know a lot about pain killers! I said yeah well I have been dealing with this over 3 years and I know what works and what doesn't work!
A great example of the problems that someone with Chronic Pain can face trying to get help. Today's attitudes towards opioids make many Doctors reluctant to prescribe any pain medication.
This Pretty much describes my experiences across the board... one hospital in particular, the one that is unfortunately the closest to me is very unfriendly when dealing with pancreatitis victims, as is the second closest one... the only hospital where I have had decent treatment (for the most part - I have stories about them as well) is over an hour away and ambulances will not take me there, I need to have a family member bring me in. The hospital where I get the "best" treatment requires me to fats for at least 48 hours, with no water or even ice chips, just an IV for hydration and that is rough. The last time I was admitted I was placed in the nephrology wing and sleep was all but impossible, and I had to be moved once because the patient I shared a semi-private room with developed a staph infection so serious they had to bring in a decontamination team to scrub and disinfect the entire room and surrounding area, and there were allot of hostile and crying patients around the clock as well. At the worst hospital I had a doctor so hostile and dead set against any pain meds that he only prescribed high doses of ibuprofin to the point that I was vomiting blood and when I complained I was transferred to another hospital, where I received proper care and a juniior nurse, not a doctor- found that part of my problem was lactose intolerance.
I wish that your experiences were isolated but I've heard from a lot of people - including myself - with similar experiences. I'm not sure if it's a lack of training in regards to Pancreatitis or just an overall lack of empathy for patients. I'm so sorry to hear about the problems that you are having and I hope you are doing better!
I've had Pancreatitis almost a year, visited ER many times.
Sometimes, my Lipase level isn't elevated, which makes me wonder where the pain is coming from.
Can anyone tell me the symptoms of a pseudocydt bursting?
How much your lipase goes up can depend upon how damaged your Pancreas is so the more damage the less reliable those levels are in determining how much pain you are in as well.
I agree and what my doctor who was great told me when I had my first Acute Pancreatitis. He told me that the damage was so bad it might not show up in blood tests. I have seen unknowledgable doctors since, and they ignore me and won't even do tests. I feel like I am dying inside but afraid to go back to the ER.
My G.I. Dr told me that with chronic recurring acute pancreatitis you can be in excruciating pain and your levels can still be normal.
I've been told the same thing. As time goes by and your Pancreas becomes more damaged there is less and less to produce the enzymes that the Doctors test to determine whether or not you have Pancreatitis.
I used to take the binder w/my husband's medical records with me for each ER visit. It turned out (as usual) that I knew more about CP than even the consulting gastro. However, getting and bringing with you hard copies of your records helps a lot with medical staff attitude. Well...that and a really pissed off wife who knew how to use big words....
It always helps to have someone in your corner!
As an ER doctor I can say we are VERY experienced with pancreatitis, and we SHOULD NOT treat chronic pain. It's not McDonald's so 'helping out the ER doc' by providing them with a list of what narcotics you want is a total joke. Let us know when you get shot, that's what we're here for. You should have a breakthrough pain plan from your PCP or pain clinic.
Wow. Just........wow. You claim ER doctors are ignorant, but all you have written is an opinion based, one sided, narrow minded argument. Back your piece with evidence. I'm sure those ER doctors can back their prescribing habits and use of narcotics with state reported narcotic prescription programs (like OARRS in Ohio) that show how much and when and by whom narcotics are prescribed. I bet they can also counter with numerous articles ALL OVER the internet and respected news outlets that claim ER doctors are the source of the opiate/heroine epidemic. Those ER doctors appear to be damned if they do and damned if they don't prescribe. It appears (from reading the previous posts) the best way to handle chronic pain is to get into pain management, have a plan for pain exacerbations and stick to it. My guess is most pain management doctors will not hesitate to call the ED or place a note in the patient's electronic medical record about the care they believe the patient should receive from an ED physician. If I'm correct, most pain management docs enter into a contract with the patient. I know the CP and other chronic pain people out there will lament and cry about the length they have to go to stay in 3/10 pain comfortably at home. You also have to understand those drugs that are treating the acute exacerbations are scheduled narcotics that can potentially cause the physician to have their drug prescribing license pulled if another authority deems their prescribing habits abnormal. What will you have the poor ED doctor stuck in the middle do?
the person you responded to isn't a doctor anymore than the people on the bus claiming that people who are obviously in convulsive seizures are just high or drunk (if it's caused by insulin levels), are the nurses they claim to be. these people, like the person above, just want to be heard and say they are professionals bc they feel the need to have their opinion respected. it's something like the mentality people with munch munchausens syndrome have. with these people the best thing you can do is ignore their post and treat it like they aren't there. they are attention seeking and will say anything to get it. i'm not judging this by the words he did or didn't use or the wordiness of his post but attitude. professional people tend to present themselves with a demeanor of profession
I apologize for the grammar mistakes I will blame it on Siri as my post sounds like a three-year-old LOL I would like to edit it but I'm not sure How
Don't worry about your grammar mistakes, we understand your points. Stay strong.
I cannot tell you how many times I have been to the ER as a result of suffering from now what was once acute pancreatitis, now chronic as a result of many MRCP's and ERCP's I explain to the doctor that I have had many stents put in the ducts to the pancreas several have been plastic and dissolve on their own and several have been metal and as a result of me having to have these stents put in is because my ducts are bent and the stents have been placed to straighten them out but as a result of the dye they use that has gotten in my pancreas so many times once what was a cut are bent and the stance have them placed to straighten them out but as a result of the die they use that has gotten in my pancreas so many times once what was acute is now a chronic. I have been told that they do not treat chronic pain when I am at the ER but I question them and ask them can you tell me if pancreatitis is life-threatening can your organs fail as a result and the answer is always the same " yes", it had been a year since my last visit which was probably seven months ago and the doctor asked me when was the last time I was here and the nurse had looked up on the computer and said it had been a year And that in fact he was the one that treated me the last time he asked me what worked best for me and I told him the medication he saw that I was prescribed this at home and asked why I was not taking it at the time I was retching profusely and unable to keep anything down and they were aware of this I almost wanted to laugh if I had not been in so much pain it was clear that I was unable to keep anything down I was treated as usual as a drug seeker and given a very low dose of pain medication and five hours later checked on in which the pain medicine had not touched it and we all know those of us who suffer from this condition that you have to stay on top of the pain so going five hours Between very low-dose pain medication is an absolute joke. I get incredibly aggravated at the fact that they go by lab work and everyone knows chronic pancreatitis that your lab work can you come out completely normal, I'm guessing most of the ER staff was not told this,I am so tired of suffering at the hands of this condition and at the hands of doctors who don't get it or just don't care animals are treated better there is so much more to say but I just don't have the energy to go there but I think we have all been there
I know all too well about the treatment at the ER for pancreatitis. I’m actually going through it right now. I mean, I’m at home, but have been to different ERs trying to get help to no avail. Everything you all mentioned is exactly true and needs to be changed. When a person comes in with a documented history of pancreatitis they should be admitted automatically. If it’s not yet documented, doctors need to be educated on this disease so they have a better understanding of the uncontrolled pain you are in. I was just at the ER a couple of nights ago and literally was crying and begging them to help me- I wasn’t asking for strong meds I just wanted to be admitted and more tests ran and for them to keep my pain down to a tolerable level They wouldn’t help me. Gave me two extra strength Tylenol and said to come back if the pain was worse or uncontrolled! I said are you serious?! The pain is uncontrolled! Why would I come back there just to be sent away again?! It is a joke, but it truly is not funny. Wouldn’t it be nice if we could transfer out pain to those drs and nurses who look at you like your faking it?! Give them s dose of the hell you are in. Anyway, I think I’m going to write an article on this issue so the professionals are truly aware of and know how to treat a patient with this condition. This is not acceptable and we deserve respect, not looked down upon. God help us all to overcome this debilitating disease. 💙🙏✝️
I just am amazed at how many people have experiences like you are having. Plus - with the current opioid crisis getting pain meds to help with a flare-up is just going to get harder!
I have IDEOPATHIC CP meaning No Causechas ever been found as to why i have CP,
I have been called a MANIULATOR & LIER, & told " ITS ALL IN MY HEAD " & the obvs " IM JUST AFTER MEDS " when my Level come up normal/not elevated ...
... now i have to carry COPIES of MY SCAN(s) RESULTS on DISCS/MEMORY STICKS for the ER DOCTORS to see for themselves that im not a lier !!! This is STILL EVEN AFTER 31years of CP !!!
I've had some of the same reactions from Doctors. If you aren't broken or bleeding when you go into the ER they just usually assume that you are drug seeking. Saying that you have a sore tummy just doesn't get much attention until after test results and then sometimes not even after tests prove you are in distress.
Hahaha... unfortunately its nice to see others being treates as I have many times. Doctors are just mechanics of the human body. Most lie to you and try to say whatever they can to get you out of their care as quickly as possible. I have no faith in the United States medical system. I have served multiple combat tours in Iraq as well as Aghanistan. The only thing Ive learned since doing so is do not trust anyone who works for money, especially high dollar jobs like doctors and attorneys.. hahaha... I'd rather die in my livigroom instead of going back to the ER to get treated like a criminal... As it stands, that may very well happen. My last ER visit, due to my CP, had made me feal so terrible that I was going to kill myself. I will not go through that again. Like I said, I would rather die at home than put my life in the hads of one of those people whom get paid to "save lives." Just keep away, especially of Hamot Medical Center in Erie, PA, and take your chances. You all probably have a higher survival rate in your livingrooms, simply hoping not to die. Good luck to all, I am sorry to anyone that has to endure the complications of Pancreatitis. I am especially sorry to my mother who just wants me to get help but does not understand that doctors, especially ER doctors, cause more problems than seem to help. They are too woried about making their dollars to do what they really should be. If there is a judgement day they will get theirs as will you and I.
I'm so sorry but your story is more the norm than the exception. Most Doctors, and especially those in ER's, just don't seem to know how to treat this disease.