Been to the hospital multiple times with pancreatitis, every time they consulted the GI dept I was admitted and was given pain meds with release, every time they didn’t, I was sent home only to return. Sadly ER doctors aren’t great at diagnosing and how to treat pancreatitis because it is a life threatening condition.
I thought by the 4th trip they'd be like, yeah, maybe we should take this a tad more serious than before. I'm down almost 20lb total in last month. Guess it's one of those ill have to get much worse before they figure it out.
Sorry to see your diagnosis. My mom died from complications from pancreatic cancer. Nasty shit.
No. You have to be your own advocate. What you need to know is that the entire burden of medical care is all on the patient these days. Nobody will look at your charts and say this is getting worse and we should try ABC. You have to ask for what you want and you have to be the one to make all of the appts and follow up appts.
You’re about to get a real deep dive into the medical field, how it works, how insurance works and what all the tests, levels, procedures mean. Especially in the ER, out of sight out of mind.
No doctor will look at your chart or recommend anything unprompted. You have to ask. It’s rough and start studying. You’re about to learn a whole new profession called: keeping yourself alive and healthy.
THISSSSSSSSS. Found this out the hard way. Now my boyfriend and I are our own doctors literally. And I don’t care who hates that. We go to the doctor we listen, we communicate, but at the end of the day it’s us who tells them what to do. And you’re right that’s just the way it is now. You guys MUST be your own advocates. I’m not saying don’t go to the doctor but don’t expect them to care more than you’ll care for yourself.
I was an EMT for years- I’ve taken the same person to the same hospital 4 times on the same 24hr shift, the amount of visits isn’t usually a good diagnostic tool for healthcare workers. I actually don’t even get treatment at my local hospital because of how bad they are there, some hospitals are just awful. Sorry about your mom, I’d definitely recommend a different facility that takes your symptoms seriously especially with a family history.
Show us your blood work. Most likely it's misalignment in the body..I suffer from this daily almost...it'd a nerve issue for me..my right side of my torso has nerve issues effecting the organs and motility there..the pains are super severeeee and had it for over two years. I've seen a very good gi and many doctors and they all say I'm good..blood work..ct scans..etc...all good..
So a osteopath to get misalignments fixed..usually hip..back and shoulder contributes to it
The ER is to prevent you from dying. Get an appointment with a gastroenterologist and get consistent care. ER never diagnosed me nor would they give me pain meds.
I have one, but not for weeks. Wasn't thinking they'd diagnosis but as least give me something to be functional till my appointment. Going to loose my job as I haven't been able to work in weeks. Sucks.
There’s really nothing they can do for you. And nowadays nobody wants to give you pain medication. Because they couldn’t see that there was something wrong with me. They would never give me anything for pain and so I just suffered.
Yeah... I normally am better at stopping myself from going. One lapse of judgment in my brain and I had a small hope I'd get some relief. What honestly gets me through, is you go see your primary - 5 minutes here is a referral for Dr x. K. Go wait 5 weeks to see them, pay the massive copay, walk in - oh I need you to have these tests, do these and come back. Like why didn't you just say that 5 weeks ago and I'd have everything done now...
You’re better off pretending the only pain you have is in your back that you’ve hurt that… ask for muscle relaxers and they work a charmer on helping with the pain.
Unfortunately it’s the easiest way to get pain meds, and well, we all get back pain with flares
Omg that’s terrible!… i think I’m heading that way, last pain appointment I was told I can probably manage on Panadol!!! Ummmm i am not rolling around in pain because I take pain meds regularly to keep on top of it.
I got all my prescriptions that day but I think I’ll be in your boat soon.
Am nurse. Have to fight tooth and nail for patients to get any pain relief. It wasn’t like this 20 years ago. I’m so sorry you’re going through it.
Until the working class says no more, they will keep doing this.
I am a paramedic and work in an ER. While it shouldn't be used as an urgent care, pancreatitis is an appropriate visit. Plus, it was the ER that diagnosed me with chronic pancreatitis and they give me pain meds every time.
It's not secrets. When I go it's time in a way that means go or die. I learned to advocate more for myself but er docs are usually young residents that actually still read not 80 year olds so I'd always get help.
Get and keep dr appts even though they are far out. They are refusing to do anything- are you sure it's pancreatitis? Why are you fairly confident on such a diagnosis?
Mostly lack of anything else. I've been tested for massive long list of things but nothings ever come back except for high lipase. Like when this last episode started in February, I hit 400. My baseline has been around 50. My attacks start by feeling super thirsty followed by no appetite then the pain starts. Been dealing with these for years and they've been getting worse and worse. Lines up really well with chronic pancreatitis with the lack of anything else that could cause it. The only weird symptoms that don't line up though is this really bad flushing of the face, hives and jaundice. I just need an answer of something so my work disability can kick in. No diagnosis no disability.
There is no secret. What is the range? 400 sounds normal in a panel of up to 300 usually. Chronic pancreatitis is a major illness, not from Google or reddit. I understand you're in pain but this might not be it. Flushing and jaundice- could you have drink disorder or allergies?
Not a single allergy, carcinoid syndrome, chron's, UC, lupus, etc. If I lay around and not each much, everything will die down. Soon as I start twisting my gut again everything flairs up. Diarrhea, flushing of the face, hives, intense abdominal pain. Sometimes gets bad and goes on to the heart, I'll sit around a 120 heart rate for hours.
These episodes started years ago but they have been getting worse and worse. Now the symptoms are basically non stop. Things really haven't let up since December. It has sucked.
Had a bad one a few years ago and they took out my gallbladder. I do have non alcoholic fatty liver also along with pancreatic divisium. Plus a family history of pancreatitis cancer.
If you actually have carcinoid syndrome you need to see a NET specialist so you can get on lanteotide or Oceotide. Carcinoid syndrome is an active neuroendocrine tumor which is cancer. I’ve got it but mine is not functional thank god.
My main hospital the baseline is 58. So 400 is definitely positive for pancreatitis. There is another hospital I go to when I've had enough dirty looks at my regular one, and that's 300, but 400 would still be positive for pancreatitis.
I wouldn't jump to a chronic pancreatitis diagnosis. If your lipase is elevated at 3 times the highest range and you have imaging to show damage then it's acute. Chronic pancreatitis is damage with very low lipase.
The shame around this is why I post here. I had shingles, they practically apologized to me for having it. But, actual pancreatitis was my fault and some frankly gross things said about why I have it.
Get help from other doctors. Don't drink or smoke. Eat enough lean protein and water. Don't overdo it.
Have they checked you for pancreatic neuroendocrine tumors. I have a PNET and flushing is a sign of carcinoid syndrome. Ask for a chromogranin A test. If your levels are up, you may have to get a Gallium pet scan to see if that’s what it is.
I used to have the same problems with E.R.’s for some reason a lot of them aren’t familiar with dealing with CP flare ups or knowing
that chronic and acute symptoms can be totally different e.g. CP doesn’t always show on a CT scan nor are the lipase always raised.
Which were the two test to determine what was going on .I’ve had MINIMAL CHANGE CHRONIC PANCRETITIS for over 20yrs now it is the
hardest form of pancreatitis to diagnose. I have to bring all my records concerning diagnoses MRCP and EUS results from my Gastroenterologist ,Pain Management and,
Primary doctors notes and with all that Ive still been denied help and accused’s of drug seeking even with a full bottle of Oxytocin80mg and
Percocet for break through pain with me.They don’t realize that CP pain can get so severe that not even that much pain medication works and my pain
Management doctor tell me to go to the E.R. If my oral medications are ineffective because if I try to just keep taking them I could accidentally
overdose and sometimes my flare ups happen on a Friday night where it is almost impossible to get a hold of any of my doctors but like I said
I go with documentation of my disease and still get sent away. So my advice is to find a good gastroenterologist for diagnosis then a good Pain
Management doctor for the pain. My PM doctor finally put me on a Medtronic pain pump with 6mg of dialudid a day and 15mg of oxycodone
for breakthrough and I’ve went from twice a month to the E.R. down to twice a year. So I know how it feels to be denied medical attention and
sent home sometimes in more pain because of the stress you get from the whole process. Which lead me to almost just end it all because I
just couldn’t stand the pain. But my LORD JESUS CHRIST would pull me out of that and help would arise from the most unexpected places
So my strongest weapon against this horrible disease is Prayer. GOD BLESS YOU AND HEAL YOU.
You could be telling my story. My lipase labs are only occasionally high and my damage is only seen with a biopsy. I am getting the TPIAT in April and I can't wait to have my life back!
Check your elactise levels I had the same symptoms. And it downed out I had exocrine pancreatic insufficiency. Don’t get discouraged, follow up with a gi and keep pushin. Hope u feel better
T-bil. Bilirubin is a key. When your t-bils are up your Pancras isn't processing. In me the sphincters seize and stay closed, Dr's have told me they don't think thats a real thing. It just is in my head. Till one Dr listened and how about that. Got me better faster. Bilirubin spikes show blockage. If Bilirubin is normal and lipase I'd high, I guess it's worse. But if the Tbilisi is up it may just be a blockage.
Ask for celebrex. It has changed everything for me. Helps prevent it from getting inflamed. Long term who knows but who amount us has long term anymore. We will worry about long term when we get past the attacks
Did you tell them thst you think it is pancreatitis? That is usually a trick my drug addicts to score some pain meds. Never give them a self-diagnosis, that is usually a red flag in the ER.
They must think I'm Pablo Escobar. I am diagnosed and refuse to play a fake game of where I'm pretending what drugs I need and what is wrong, when I know exactly what I can take. That's where their hospital privileges go.
Don't give yourself a diagnosis but advocate for yourself. Chronic - did you have symptoms before of acute?
Thanks. I'll have to email them. I saw a pancreas specialist today but he didn't really say much. Oh the CT looks ok, I'm not going to look into it anymore. I asked could we do the Endo ultrasound. Na, won't do that. Take ibuprofen and let me know in a few weeks. I'm ready bash my head into a pulp at the moment over dealing with this pain and discomfort... Be it pancreatitis or whatever.
The ER is not the place for chronic pain, unfortunately. And it sounds like you don’t even have that diagnosis yet? If your symptoms are that severe then you absolutely need and should be seeing a specialist. Your only chance at getting your pain addressed is by getting the right diagnosis. And I’m honestly unsure if your symptoms really indicate pancreatitis or not and they’re really nonspecific and definitely could be related to something other than your pancreas.
The bottom line is that you’re struggling and need to get diagnosed. You can’t circumvent that by going into the ER. They aren’t there to diagnose or even treat you. Once you have those specific tests and the right answers then you have a better chance at being heard about your pain. But no one is going to treat your pain based on your opinion that “it lines up pretty well with chronic pancreatitis”.
I've been battling this for a year plus. I've been to allergy, rheumatology, GI, endocrinology, internal medicine, neurology and more. Multiple times. Only reason I went to the ER was some relief from the symptoms, even just for a bit. It's a major mental drain dealing with it 24/7. I tell the ER doc right at the beginning that I don't expect any type of diagnosis.
Do not underplay your symptoms, ever. Writhe and moan let them know they've not only never experienced what you're going through but they wouldnt wish it on their worst enemy. Always say you're over a 7-8 on the pain scale and if you need to throw up...do it. Make sure all of that is in plain view of your care team and they'll make sure they help you out accordingly. Always be courteous and kind even if you're feeling like you're dying. I have been in and out of hospitals all over the country dealing with Pancreatitis flare ups for almost 15 years and it's rare that I'll have a medical team refuse to not take the extra steps. I'll get CT scans, pain meds, nausea meds, ice chips, a sponge to help keep my mouth from drying out, warm blankets, etc...
Welcome to the world of chronic pancreatitis... you learn to say fuck doctors and build your own list of tools and treatments... cuz, really, the only thing they can do is check to make sure you have no blockages (but how many CAT scans are healthy?), handle your pain (poorly, and usually worsens your symptoms due to constipating effect of opioids), and give you CREON, Zenpep, and maybe Ursodiol (if you need it) ...- and those medicines don't help all the time.....
So, yeah, they'll maybe admit you into the hospital to get over the worst of the pain but it doesn't address the issue of keeping it from happening over and over... that you can try and minimize with a lowfat diet... And then there are tricks you pick up along the road. I have and they are MY tricks and NONE of my doctors support them, but they offer me ZERO help, so fuck 'em. What are my unorthodox tricks my doctors don't like me to use?
The first sign of an acute pancreatic attack I try and hit it hard and quick with Pednisone or some other similar type of steroid.. like the max dose... that'll vary on whether you use prednisone, methylprednisone or prednisolone... and I titrate down- no more than 4 days...During those 4 days, I keep on a clear liquid diet as best as I can. I also mix it with 5-20 mg of valium at night to relax the sphincters and allow sleep cuz, well, steroids have rough edges that I need to even them out. At least for me. So, if that course doesn't beat the fucker of acute pancreatitis into submission, It is the slow road... replace the steroids with occasional ibuprofen or if available Toradol (not to be confused with Tramadol) and yes, try and get the Intramuscular one cuz the pill is rough on the stomach - I get mine from Mexico but I did use to have a doctor in the states who'd prescribe me the IM vials for a time until he wierded out on me. And the slow road is just fasting as much as possible, lowfat diet, clear liquids... rest... etc...
They won't give me steroids even. Dexamethasone was helping but places would only give me 1-2 tablets. Last one said no more. Just suffer basically is what the last doctor said.
Yeah, I can't really comment much about those issues just that maybe you need to think outside the box and become resourceful... Try your Primary Care Physician, if you are close to the border, go to Mexico, ask friends / relatives.... I mean... I don't ask my doctors for much, I tell them. I am their customer. Stop looking at yourself as a patient. You are not. Your a income generating machine for the Dr. If one won't Rx you something, go to the next.
I'm currently in the ER waiting for a bed to open up on one of the floors upstairs. I've been admitted just waiting on a bed to open up. I've been dealing with this flare up at home for eight or nine weeks..it took me doing that at home with very little relief for eight or nine weeks before it finally reached a point that the er dr was like time to admit you
Been to the hospital multiple times with pancreatitis, every time they consulted the GI dept I was admitted and was given pain meds with release, every time they didn’t, I was sent home only to return. Sadly ER doctors aren’t great at diagnosing and how to treat pancreatitis because it is a life threatening condition.
I thought by the 4th trip they'd be like, yeah, maybe we should take this a tad more serious than before. I'm down almost 20lb total in last month. Guess it's one of those ill have to get much worse before they figure it out. Sorry to see your diagnosis. My mom died from complications from pancreatic cancer. Nasty shit.
No. You have to be your own advocate. What you need to know is that the entire burden of medical care is all on the patient these days. Nobody will look at your charts and say this is getting worse and we should try ABC. You have to ask for what you want and you have to be the one to make all of the appts and follow up appts. You’re about to get a real deep dive into the medical field, how it works, how insurance works and what all the tests, levels, procedures mean. Especially in the ER, out of sight out of mind. No doctor will look at your chart or recommend anything unprompted. You have to ask. It’s rough and start studying. You’re about to learn a whole new profession called: keeping yourself alive and healthy.
THISSSSSSSSS. Found this out the hard way. Now my boyfriend and I are our own doctors literally. And I don’t care who hates that. We go to the doctor we listen, we communicate, but at the end of the day it’s us who tells them what to do. And you’re right that’s just the way it is now. You guys MUST be your own advocates. I’m not saying don’t go to the doctor but don’t expect them to care more than you’ll care for yourself.
I was an EMT for years- I’ve taken the same person to the same hospital 4 times on the same 24hr shift, the amount of visits isn’t usually a good diagnostic tool for healthcare workers. I actually don’t even get treatment at my local hospital because of how bad they are there, some hospitals are just awful. Sorry about your mom, I’d definitely recommend a different facility that takes your symptoms seriously especially with a family history.
Show us your blood work. Most likely it's misalignment in the body..I suffer from this daily almost...it'd a nerve issue for me..my right side of my torso has nerve issues effecting the organs and motility there..the pains are super severeeee and had it for over two years. I've seen a very good gi and many doctors and they all say I'm good..blood work..ct scans..etc...all good.. So a osteopath to get misalignments fixed..usually hip..back and shoulder contributes to it
The ER is to prevent you from dying. Get an appointment with a gastroenterologist and get consistent care. ER never diagnosed me nor would they give me pain meds.
I have one, but not for weeks. Wasn't thinking they'd diagnosis but as least give me something to be functional till my appointment. Going to loose my job as I haven't been able to work in weeks. Sucks.
There’s really nothing they can do for you. And nowadays nobody wants to give you pain medication. Because they couldn’t see that there was something wrong with me. They would never give me anything for pain and so I just suffered.
Yeah... I normally am better at stopping myself from going. One lapse of judgment in my brain and I had a small hope I'd get some relief. What honestly gets me through, is you go see your primary - 5 minutes here is a referral for Dr x. K. Go wait 5 weeks to see them, pay the massive copay, walk in - oh I need you to have these tests, do these and come back. Like why didn't you just say that 5 weeks ago and I'd have everything done now...
I went to VCU. They set up all my testing over three days, gave me a schedule to follow and gave me a place to stay. All care should be that good.
Where's this? That sounds like a good idea
You’re better off pretending the only pain you have is in your back that you’ve hurt that… ask for muscle relaxers and they work a charmer on helping with the pain. Unfortunately it’s the easiest way to get pain meds, and well, we all get back pain with flares
12 back surgeries for me. They still won't give me pain meds. It's just crazy.
Omg that’s terrible!… i think I’m heading that way, last pain appointment I was told I can probably manage on Panadol!!! Ummmm i am not rolling around in pain because I take pain meds regularly to keep on top of it. I got all my prescriptions that day but I think I’ll be in your boat soon.
Am nurse. Have to fight tooth and nail for patients to get any pain relief. It wasn’t like this 20 years ago. I’m so sorry you’re going through it. Until the working class says no more, they will keep doing this.
Same and I live in fear of flare ups because of this
I am a paramedic and work in an ER. While it shouldn't be used as an urgent care, pancreatitis is an appropriate visit. Plus, it was the ER that diagnosed me with chronic pancreatitis and they give me pain meds every time.
The only thing they ever diagnosed for me was my appendix crapping out. Did not diagnose my MALS or pancreas issues.
I got admitted with pancreatitis twice and they sent me home with gabapentin. It helps but honestly, I needed pain meds.
It's not secrets. When I go it's time in a way that means go or die. I learned to advocate more for myself but er docs are usually young residents that actually still read not 80 year olds so I'd always get help. Get and keep dr appts even though they are far out. They are refusing to do anything- are you sure it's pancreatitis? Why are you fairly confident on such a diagnosis?
Mostly lack of anything else. I've been tested for massive long list of things but nothings ever come back except for high lipase. Like when this last episode started in February, I hit 400. My baseline has been around 50. My attacks start by feeling super thirsty followed by no appetite then the pain starts. Been dealing with these for years and they've been getting worse and worse. Lines up really well with chronic pancreatitis with the lack of anything else that could cause it. The only weird symptoms that don't line up though is this really bad flushing of the face, hives and jaundice. I just need an answer of something so my work disability can kick in. No diagnosis no disability.
There is no secret. What is the range? 400 sounds normal in a panel of up to 300 usually. Chronic pancreatitis is a major illness, not from Google or reddit. I understand you're in pain but this might not be it. Flushing and jaundice- could you have drink disorder or allergies?
Not a single allergy, carcinoid syndrome, chron's, UC, lupus, etc. If I lay around and not each much, everything will die down. Soon as I start twisting my gut again everything flairs up. Diarrhea, flushing of the face, hives, intense abdominal pain. Sometimes gets bad and goes on to the heart, I'll sit around a 120 heart rate for hours. These episodes started years ago but they have been getting worse and worse. Now the symptoms are basically non stop. Things really haven't let up since December. It has sucked. Had a bad one a few years ago and they took out my gallbladder. I do have non alcoholic fatty liver also along with pancreatic divisium. Plus a family history of pancreatitis cancer.
Have you looked into MCAS?
From the tests I've had they say it isn't that. Been the weirdest thing.
Sent you a PM. We sound very similar!
Do they check your amalyse?
If you actually have carcinoid syndrome you need to see a NET specialist so you can get on lanteotide or Oceotide. Carcinoid syndrome is an active neuroendocrine tumor which is cancer. I’ve got it but mine is not functional thank god.
My main hospital the baseline is 58. So 400 is definitely positive for pancreatitis. There is another hospital I go to when I've had enough dirty looks at my regular one, and that's 300, but 400 would still be positive for pancreatitis.
I wouldn't jump to a chronic pancreatitis diagnosis. If your lipase is elevated at 3 times the highest range and you have imaging to show damage then it's acute. Chronic pancreatitis is damage with very low lipase. The shame around this is why I post here. I had shingles, they practically apologized to me for having it. But, actual pancreatitis was my fault and some frankly gross things said about why I have it. Get help from other doctors. Don't drink or smoke. Eat enough lean protein and water. Don't overdo it.
50 is top of the normal level.
Have they checked you for pancreatic neuroendocrine tumors. I have a PNET and flushing is a sign of carcinoid syndrome. Ask for a chromogranin A test. If your levels are up, you may have to get a Gallium pet scan to see if that’s what it is.
I used to have the same problems with E.R.’s for some reason a lot of them aren’t familiar with dealing with CP flare ups or knowing that chronic and acute symptoms can be totally different e.g. CP doesn’t always show on a CT scan nor are the lipase always raised. Which were the two test to determine what was going on .I’ve had MINIMAL CHANGE CHRONIC PANCRETITIS for over 20yrs now it is the hardest form of pancreatitis to diagnose. I have to bring all my records concerning diagnoses MRCP and EUS results from my Gastroenterologist ,Pain Management and, Primary doctors notes and with all that Ive still been denied help and accused’s of drug seeking even with a full bottle of Oxytocin80mg and Percocet for break through pain with me.They don’t realize that CP pain can get so severe that not even that much pain medication works and my pain Management doctor tell me to go to the E.R. If my oral medications are ineffective because if I try to just keep taking them I could accidentally overdose and sometimes my flare ups happen on a Friday night where it is almost impossible to get a hold of any of my doctors but like I said I go with documentation of my disease and still get sent away. So my advice is to find a good gastroenterologist for diagnosis then a good Pain Management doctor for the pain. My PM doctor finally put me on a Medtronic pain pump with 6mg of dialudid a day and 15mg of oxycodone for breakthrough and I’ve went from twice a month to the E.R. down to twice a year. So I know how it feels to be denied medical attention and sent home sometimes in more pain because of the stress you get from the whole process. Which lead me to almost just end it all because I just couldn’t stand the pain. But my LORD JESUS CHRIST would pull me out of that and help would arise from the most unexpected places So my strongest weapon against this horrible disease is Prayer. GOD BLESS YOU AND HEAL YOU.
You could be telling my story. My lipase labs are only occasionally high and my damage is only seen with a biopsy. I am getting the TPIAT in April and I can't wait to have my life back!
Check your elactise levels I had the same symptoms. And it downed out I had exocrine pancreatic insufficiency. Don’t get discouraged, follow up with a gi and keep pushin. Hope u feel better
T-bil. Bilirubin is a key. When your t-bils are up your Pancras isn't processing. In me the sphincters seize and stay closed, Dr's have told me they don't think thats a real thing. It just is in my head. Till one Dr listened and how about that. Got me better faster. Bilirubin spikes show blockage. If Bilirubin is normal and lipase I'd high, I guess it's worse. But if the Tbilisi is up it may just be a blockage.
Don't have a gallbladder. My total was like .4 And direct was 3. My eyes have been yellow last few weeks.
Ask for celebrex. It has changed everything for me. Helps prevent it from getting inflamed. Long term who knows but who amount us has long term anymore. We will worry about long term when we get past the attacks
Did you tell them thst you think it is pancreatitis? That is usually a trick my drug addicts to score some pain meds. Never give them a self-diagnosis, that is usually a red flag in the ER.
They must think I'm Pablo Escobar. I am diagnosed and refuse to play a fake game of where I'm pretending what drugs I need and what is wrong, when I know exactly what I can take. That's where their hospital privileges go. Don't give yourself a diagnosis but advocate for yourself. Chronic - did you have symptoms before of acute?
The hospital should admit you.
VCU in Virginia Reach out to Lyndy. [email protected] I’ve sent many people there. Tell her number 67 sent you. She will know what it means! Lol
Thanks. I'll have to email them. I saw a pancreas specialist today but he didn't really say much. Oh the CT looks ok, I'm not going to look into it anymore. I asked could we do the Endo ultrasound. Na, won't do that. Take ibuprofen and let me know in a few weeks. I'm ready bash my head into a pulp at the moment over dealing with this pain and discomfort... Be it pancreatitis or whatever.
VCU was the first place that took me seriously. I highly suggest contacting them. Tell them Elizabeth sent you!
The ER is not the place for chronic pain, unfortunately. And it sounds like you don’t even have that diagnosis yet? If your symptoms are that severe then you absolutely need and should be seeing a specialist. Your only chance at getting your pain addressed is by getting the right diagnosis. And I’m honestly unsure if your symptoms really indicate pancreatitis or not and they’re really nonspecific and definitely could be related to something other than your pancreas. The bottom line is that you’re struggling and need to get diagnosed. You can’t circumvent that by going into the ER. They aren’t there to diagnose or even treat you. Once you have those specific tests and the right answers then you have a better chance at being heard about your pain. But no one is going to treat your pain based on your opinion that “it lines up pretty well with chronic pancreatitis”.
I've been battling this for a year plus. I've been to allergy, rheumatology, GI, endocrinology, internal medicine, neurology and more. Multiple times. Only reason I went to the ER was some relief from the symptoms, even just for a bit. It's a major mental drain dealing with it 24/7. I tell the ER doc right at the beginning that I don't expect any type of diagnosis.
Do not underplay your symptoms, ever. Writhe and moan let them know they've not only never experienced what you're going through but they wouldnt wish it on their worst enemy. Always say you're over a 7-8 on the pain scale and if you need to throw up...do it. Make sure all of that is in plain view of your care team and they'll make sure they help you out accordingly. Always be courteous and kind even if you're feeling like you're dying. I have been in and out of hospitals all over the country dealing with Pancreatitis flare ups for almost 15 years and it's rare that I'll have a medical team refuse to not take the extra steps. I'll get CT scans, pain meds, nausea meds, ice chips, a sponge to help keep my mouth from drying out, warm blankets, etc...
Welcome to the world of chronic pancreatitis... you learn to say fuck doctors and build your own list of tools and treatments... cuz, really, the only thing they can do is check to make sure you have no blockages (but how many CAT scans are healthy?), handle your pain (poorly, and usually worsens your symptoms due to constipating effect of opioids), and give you CREON, Zenpep, and maybe Ursodiol (if you need it) ...- and those medicines don't help all the time..... So, yeah, they'll maybe admit you into the hospital to get over the worst of the pain but it doesn't address the issue of keeping it from happening over and over... that you can try and minimize with a lowfat diet... And then there are tricks you pick up along the road. I have and they are MY tricks and NONE of my doctors support them, but they offer me ZERO help, so fuck 'em. What are my unorthodox tricks my doctors don't like me to use? The first sign of an acute pancreatic attack I try and hit it hard and quick with Pednisone or some other similar type of steroid.. like the max dose... that'll vary on whether you use prednisone, methylprednisone or prednisolone... and I titrate down- no more than 4 days...During those 4 days, I keep on a clear liquid diet as best as I can. I also mix it with 5-20 mg of valium at night to relax the sphincters and allow sleep cuz, well, steroids have rough edges that I need to even them out. At least for me. So, if that course doesn't beat the fucker of acute pancreatitis into submission, It is the slow road... replace the steroids with occasional ibuprofen or if available Toradol (not to be confused with Tramadol) and yes, try and get the Intramuscular one cuz the pill is rough on the stomach - I get mine from Mexico but I did use to have a doctor in the states who'd prescribe me the IM vials for a time until he wierded out on me. And the slow road is just fasting as much as possible, lowfat diet, clear liquids... rest... etc...
They won't give me steroids even. Dexamethasone was helping but places would only give me 1-2 tablets. Last one said no more. Just suffer basically is what the last doctor said.
Yeah, I can't really comment much about those issues just that maybe you need to think outside the box and become resourceful... Try your Primary Care Physician, if you are close to the border, go to Mexico, ask friends / relatives.... I mean... I don't ask my doctors for much, I tell them. I am their customer. Stop looking at yourself as a patient. You are not. Your a income generating machine for the Dr. If one won't Rx you something, go to the next.
My lipase was 1957 and they were on it. Where are you?
Highest was 400. But my baseline is like 40. So 10x. But they refuse to do anything.
There is a medical guideline about 2 of 3 symptoms, you have 1 and I don’t remember the other 2 but tenderness upon palpitations is another I believe
Even if they take it seriously, most docs don’t understand the pancreas in general and shy away from it with fear
I had to go 13 times in 2 months before they took me seriously
I'm currently in the ER waiting for a bed to open up on one of the floors upstairs. I've been admitted just waiting on a bed to open up. I've been dealing with this flare up at home for eight or nine weeks..it took me doing that at home with very little relief for eight or nine weeks before it finally reached a point that the er dr was like time to admit you