Diabetic Gastroparesis or Chronic Pancreatitis in the real world

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Diablo123

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My question for those out in real world practice. How do you handle these patients? They come in saying intractable abdominal pain "I haven't been able to eat or drink in a week!" and are generally on an absurd amount of pain medication. Then you get labs/imaging and there is nothing out of line. I hate these patients with a passion. My attendings always say "admit them for pain control and hydration" when there is nothing to fix. Now I am left trying to justify an admission to the hospitalist when every electrolyte is rock solid, their imaging is normal and they appear to be completely comfortable complaining of their pain. How do you guys deal with this in the real world? Or SHUDDER is it more of the same.

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My question for those out in real world practice. How do you handle these patients? They come in saying intractable abdominal pain "I haven't been able to eat or drink in a week!" and are generally on an absurd amount of pain medication. Then you get labs/imaging and there is nothing out of line. I hate these patients with a passion. My attendings always say "admit them for pain control and hydration" when there is nothing to fix. Now I am left trying to justify an admission to the hospitalist when every electrolyte is rock solid, their imaging is normal and they appear to be completely comfortable complaining of their pain. How do you guys deal with this in the real world? Or SHUDDER is it more of the same.

Thank you for bringing this up. After my IM rotation being on the receiving end, I realize there is no endpoint. I'm curious to know community practice on this.
 
Droperidol used to be my go to, but we don't have access to it any more. I read on this board about the ativan/haldol combo and have been using it extensively ever since. The nurses may look at you funny, but I swear it works ninety percent of the time.

The other part is you gotta do what your attendings want. Once you're on your own, you can practice as you see fit. If they don't have clearly dangerous pathology, I discharge the majority of these.
 
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After a while you'll develop an approach and a gestalt towards these pts.

You get to know the frequent fliers. They've been fired by every GI and pain clinic within 100 miles. They are allergic to all NSAIDs and anti-emetics but phenergan. The only pain medicine that works is "the one that starts with a 'D', dilo... dila... something like that." I typically give them the one and done speech. All tests normal, they get 1 dose of pain meds, and they go home. No Rx for narcs. Ask the triage nurse how the pt was in the lobby, vomiting, crying, or talking calmly on their cell phone and eating cheetos. Observe them when they don't know anyone is around. Are they sleeping comfortably or checking Facebook. Document all of this. Typically, this works.

If not, admit for pain control. While you are waiting for the pt to be admitted, write some PRN pain and nausea med orders. It'll keep the nurses from having to frequently ask for more meds and it will placate the 'seeking' pt if they know that, "We'll give you something in another 30 minutes."

Overall, don't take it personally. It's not you vs. the patient as the defender of dilaudid's sacred virginity.

and remember, pain is the sixth vital sign :bang:
 
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I'm sure I'll pay for this my next shift but:

I hardly see these patients any more. I don't know if its a residency or region specific thing or if I've just learned how to get these patients to leave. It seemed like I saw this once a shift in residency.

Maybe once a year I'll get someone like this and either give droperidol or ativan. About 50% improve, I admit the rest. I don't feel too bad admitting these because its pretty rare (one a year or so).

I generally don't admit anyone for pain control (or give a 2nd dose of pain meds) if they don't have an objective finding. If I can tell early on that they're angling for an admission for hydration I tell them that I shouldn't give them pain meds so that the admitting docs take them seriously. I let them know the hospitalists will only be giving them their home pain meds. I'll also go through the narcs are bad for your nausea and cause rebound nausea talk. Most of them leave.

Our group as a whole is pretty tight with pain meds so few patients come in with an expectation for multiple doses. Same with migraines. If they've received opiates for their migraine in the past I generally don't try to convince them this is a bad idea (lost cause) but I tell them I'll give them one round of IM dilaudid, phenergan and benedryl and they'll go home after that. I tell them if that doesn't fix their pain, in my experience, nothing in the ER will. If they haven't received opiates in the past I'll give toradol, phenergan and benedryl. I do not start an IV on these folks.
 
I approach exactly like Perrin and I really try not to spend too much time on these patients. Essentially, if they "can't" or "refuse" to tolerate PO, then they get admitted. I make sure to let them know on the front end that we're going to go through this "round" of meds once and IF they are better, I might send them home on some pain/nausea meds. Most follow the little white rabbit but others are just dead set on coming in and it's not worth fighting them or wasting your time.

The hospitalist might groan but I always add in some recommendations for the future to "make it easier for us to discharge the pt" such as gastric motility study, GI consult excluding gastroparesis, etc... Either way, if they can't tolerate PO, can't go home, call medicine and you're done. Get them out of the ED.

As for the chronic pancreatitis. I don't see as much of these but essentially the same approach. I also let them know that it's "going to be awhile" after that "one round" before they get upstairs and are able to get more pain medicine. I may give little bumps to keep nursing's ability to "address their pain" but you'd be surprised how many sign out AMA because they can't get more Dilaudid.
 
I don't give dilaudid to these patients period. Usually most either elope, or AMA once they find out they aren't getting what they want.

If they are pros and are angling for admission and claim "I can't keep anything down", then I'll write for one dose of oral percocet. Surprisingly they are able to keep down a bland diet of only narcotics in most cases. If they swallow the pill they go home.
 
A lot of it is the environment you find yourself in. If you're in a place with a residency program that's eager for admissions for the teaching program, it's easier to take that path of least resistance and admit a bunch of soft stuff. The same goes if you're in a community hospital where the hospitalists are paid on RVUs and hungry for admissions. They might not mind taking these. If you're at a place that's overwhelmed with a group of burned out hospitalists, you can't constantly be admitting chronic recurrent conditions with no objective evidence of anything other than Dilaudopenia.
 
I tend to think it's the fluffy/lovely academic medical center mentality that gets these patients coddled. You have faculty trying to demonstrate nonjudgmental humanism etc. to the trainees/medical students, and these patients end up getting unnecessary work-ups and not-infrequent narcotic pain control.

Non-sick presentations from our regulars get haloperidol and neglect, and usually they elope pretty fast with multiple other EDs within walking distance.
 
Xaelia, I love that combination of Haldol and neglect. It's a potent cocktail and I will try it on my next symptomatic dilaudopenic!
 
I approach exactly like Perrin and I really try not to spend too much time on these patients. Essentially, if they "can't" or "refuse" to tolerate PO, then they get admitted. I make sure to let them know on the front end that we're going to go through this "round" of meds once and IF they are better, I might send them home on some pain/nausea meds. Most follow the little white rabbit but others are just dead set on coming in and it's not worth fighting them or wasting your time.

The hospitalist might groan but I always add in some recommendations for the future to "make it easier for us to discharge the pt" such as gastric motility study, GI consult excluding gastroparesis, etc... Either way, if they can't tolerate PO, can't go home, call medicine and you're done. Get them out of the ED.

As for the chronic pancreatitis. I don't see as much of these but essentially the same approach. I also let them know that it's "going to be awhile" after that "one round" before they get upstairs and are able to get more pain medicine. I may give little bumps to keep nursing's ability to "address their pain" but you'd be surprised how many sign out AMA because they can't get more Dilaudid.

I've read many posts on this website and if this group represents the physicians who will be treating me, my children and grandchildren, I fear greatly for their health. I am THAT PATIENT. I have chronic pancreatitis. Ever heard of a pancreas, other than not to touch it? An AP attack will obviously show elevated lipase/amalyse and often LFT's. BUT, a person with chronic pancreatitis often has flare ups for which their meds at home do not help, hence their trip to the ER for help. But, a lazy, unmotivated ER resident probably does not know that with chronic CP, the pancreas is burnt out and lipase/amalyse doe not elevate. Also we are typically very dehydrated with low potassium etc., due to severe diarrhea and vomiting. What then? Most CP patients have pain meds at home as well as nausea meds. We Hate coming to the ER to be treated as drug seekers. We have prescriptions to help the day to day every day pain, but we come to you when nothing is working. Have a little compassion, young doctors. Just because a bone is not sticking out through our skin does not mean that we are drug seeking. We are seeking help - from you. Please explore chronic pain and especially chronic pancreatitis. If you want to be of benefit to your patients, you will. I just wish for one hour all physicians could experience the pain in all its glory from an attack/flare. I've had surgery, I've had children. I would rather birth quintuplets than have an attack or flare. Where is your compassion and care?
 
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I've read many posts on this website and if this group represents the physicians who will be treating me, my children and grandchildren, I fear greatly for their health. I am THAT PATIENT. I have chronic pancreatitis. Ever heard of a pancreas, other than not to touch it? An AP attack will obviously show elevated lipase/amalyse and often LFT's. BUT, a person with chronic pancreatitis often has flare ups for which their meds at home do not help, hence their trip to the ER for help. But, a lazy, unmotivated ER resident probably does not know that with chronic CP, the pancreas is burnt out and lipase/amalyse doe not elevate. Also we are typically very dehydrated with low potassium etc., due to severe diarrhea and vomiting. What then? Most CP patients have pain meds at home as well as nausea meds. We Hate coming to the ER to be treated as drug seekers. We have prescriptions to help the day to day every day pain, but we come to you when nothing is working. Have a little compassion, young doctors. Just because a bone is not sticking out through our skin does not mean that we are drug seeking. We are seeking help - from you. Please explore chronic pain and especially chronic pancreatitis. If you want to be of benefit to your patients, you will. I just wish for one hour all physicians could experience the pain in all its glory from an attack/flare. I've had surgery, I've had children. I would rather birth quintuplets than have an attack or flare. Where is your compassion and care?

Whhhhhaaaaaaattt? Chronic pancreatitis patients don't have elevation in their lipase levels? Color me confused! <read: sarcasm>

Every intern knows that....

I wouldn't say you're 'that patient,' I'd say you're 'that guy.'
 
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I really hope you guys take the time to have a look at Dr Whitcomb's YouTube videos on Chronic Pancreatitis.

I'm just astounded at how you treat vulnerable patients, whom have only presented to the emergency room as they can't keep oral pain meds down and the vomiting steatorrhea and pain are off the scale.

I'm not disputing some drug seekers may use pancreatitis to score drugs, but this is by far the exception not the rule.

If you lived with pancreatitis both acute & chronic for any length of time I'm sure you would be a lot more compassionate. Imagine if it was your sister, mother friend.

Think guys, I haven't been to A&E in over 2 years, (ER) this disease is comparable to cancer with the pain it causes.
 
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I'm not disputing some drug seekers may use pancreatitis to score drugs, but this is by far the exception not the rule.
This proves that you don't have any idea what you're talking about.

Also, your use of A&E suggests you're in Britain - y'all don't have the narcotic abuse problem that we have so your experiences don't apply to us here.
 
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Last time I looked Ireland wasn't in
Britain!
I may not have presented to your ER, but there is a fair amount of drug abuse here.

Getting back to the point, I still think it's horrible how you talk about pancreatitis patients, regardless of where I live.
 
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Well, we are probably not talking about you then.

None of us lump all patients with chronic pancreatic in the same group. You are stating that we just don't understand where you're coming from. Unless, you've been an attending physician (as most of us are - rather than the "lazy residents" you presume) then you also don't understand where we're coming from.

When we read the title, we know that it's not talking about folks like you that have been to the ER (or A/E) once or twice a year. We're talking about folks who are there more than 70 times a year. They often have co morbid personality disorder, are disruptive to other folks who are not abusing the system (like yourself), and make demands on the type, amount and frequency of the medications they receive.

I can assure you that every single person who reads this thread has an understanding of chronic pancreatitis without enzyme elevation. We have all known this since medical school. We also have enough common sense and EXPERIENCE to know that someone in the ER more than 70 times a year does not likely have an emergency and is not likely served by emergency care.

As far as your claim that these patients are the exception rather than the rule:
1. It's somewhat irrelevant as this thread is only talking about these patients (whether they are exceptions or not).
2. From what experience do you base your conclusion. One persons experience with their own disease is hardly comprehensive. I would wager most of us have seen far more than 5,000 patient encounters with epigastric pain and nausea.

Lastly, you make some valid points about the way this sounds to people not in the health profession. That being said, this forum is not intended for people who are not currently either attendings or residents in emergency medicine. Its open and free, and you're welcome to "pull back the curtain" but do so at your own risk.
 
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Last time I looked Ireland wasn't in
Britain!
I may not have presented to your ER, but there is a fair amount of drug abuse here.

Getting back to the point, I still think it's horrible how you talk about pancreatitis patients, regardless of where I live.

It's not even close. Look up the stats.

Nobody wants to watch anyone in pain. But I don't want to create a bunch of addicts. We prescribe all these opiods to people...then they start doing herion because it is cheaper/more accessible. Then they overdose and die.

More importantly the ER isn't were their pain control should happen. They should see a pain management practice and see 1 doctor and have a pain contract.

We don't have a single medical record system like you do. Unless a physician looks the patient up in a separate database they would have zero idea the person didn't just get 50 percocets from the urgent care down the road.
 
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Whhhhhaaaaaaattt? Chronic pancreatitis patients don't have elevation in their lipase levels? Color me confused! <read: sarcasm>

Every intern knows that....

I wouldn't say you're 'that patient,' I'd say you're 'that guy.'

It is well established that when the pancreas burns out, it produces little if any elevation. It's broken. It doesn't work right. You may want to look at http://emedicine.medscape.com/article/181554-workup where it says:
Blood tests
Serum amylase and lipase levels may be slightly elevated in chronic pancreatitis; high levels are found only during acute attacks of pancreatitis. In the later stages of chronic pancreatitis, atrophy of the pancreatic parenchyma can result in normal serum enzyme levels because of significant fibrosis of the pancreas, resulting in decreased concentrations of these enzymes within the pancreas.

While low concentrations of serum trypsin are relatively specific for advanced chronic pancreatitis, they are not sensitive enough to be helpful in most patients with mild to moderate disease.

Laboratory studies to identify causative factors of chronic pancreatitis include serum calcium and triglyceride levels. When common etiologies are not found, research protocols are available to test for genetic mutations in cationic trypsinogen andCFTR.

Maybe every intern needs to learn a bit more about the pancreas.
Whhhhhaaaaaaattt? Chronic pancreatitis patients don't have elevation in their lipase levels? Color me confused! <read: sarcasm>

Every intern knows that....

I wouldn't say you're 'that patient,' I'd say you're 'that guy.'
Whhhhhaaaaaaattt? Chronic pancreatitis patients don't have elevation in their lipase levels? Color me confused! <read: sarcasm>

Every intern knows that....

I wouldn't say you're 'that patient,' I'd say you're 'that guy.'
 
Are you so dense that you miss my sarcasm when I explicitly write "read: sarcasm"?

To everyone else on the forum, sorry for feeding the troll.

It is well established that when the pancreas burns out, it produces little if any elevation. It's broken. It doesn't work right. You may want to look at http://emedicine.medscape.com/article/181554-workup where it says:
Blood tests
Serum amylase and lipase levels may be slightly elevated in chronic pancreatitis; high levels are found only during acute attacks of pancreatitis. In the later stages of chronic pancreatitis, atrophy of the pancreatic parenchyma can result in normal serum enzyme levels because of significant fibrosis of the pancreas, resulting in decreased concentrations of these enzymes within the pancreas.

While low concentrations of serum trypsin are relatively specific for advanced chronic pancreatitis, they are not sensitive enough to be helpful in most patients with mild to moderate disease.

Laboratory studies to identify causative factors of chronic pancreatitis include serum calcium and triglyceride levels. When common etiologies are not found, research protocols are available to test for genetic mutations in cationic trypsinogen andCFTR.

Maybe every intern needs to learn a bit more about the pancreas.
 
Maybe every intern needs to learn a bit more about the pancreas.

Most of us are attendings, not interns or residents as you predispose. I can guarantee you that all of us know more about acute and/or chronic pancreatitis than you do. I treat literally hundreds of these patients in a year. While some of the chronic pancreatitis patients are real, the vast majority are just drug-seeking *ssholes in a ratio of about 1:10.
 
This person probably needs to be banned. He/She is posting under multiple usernames and posting identical material in multiple threads as well as linking to off site videos.

I don't mind him/her coming on here and sharing their experience, but it doesn't seem that she has even read the replies or understand the difference between what we are saying and what she is hearing.
 
This person probably needs to be banned. He/She is posting under multiple usernames and posting identical material in multiple threads as well as linking to off site videos.

I don't mind him/her coming on here and sharing their experience, but it doesn't seem that she has even read the replies or understand the difference between what we are saying and what she is hearing.


I am just one person. I am not posting under multiple user names. I have read every reply. I guess it all boils down to the small but real fact that serious issues are rising so rapidly regarding treatment of pain in the ER setting. After reading prior texts, I became enraged to see that attending physicians also refer to patients as trolls, etc. and deem them unworthy of kindness or considerations. Quite frankly, I am sickened by this group of physicians lack of empathy and crass disregard for the rights of human beings, even broken ones. For all that is holy, though not administratively efficient, can you continue to justify the judgment calls you make based on stereotypical demographics.

Oh, I did apologize for cross posting as that was not my intent. This is also why I was late to learn of the posts in this forum.
 
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Firstly, a quote off of a TED TALKS:


"Unfortunately, the misinterpretation of the underpinnings of chronic pain can and is leading to a lack of proper investigation and medical treatment in our case. Chronic pain theory can be an excuse for and legitimizes lazy medical care."


1)

This is Dr. Sid Schwab, retired surgeon, who has an online surgeons blog called" Rocks in a Bag"that discusses SOD/Pancreatic problems and postop problems after cholecystectomy (gallbladder removal).

Scroll to the paragraph in parenthesis before the comment area and continue clicking on "UPDATE... NEXT and NEXT, etc... To read the entire blog of approx 5 pages:


http://surgeonsblog.blogspot.com/2007/03/rocks-in-bag-what-i-know-about.html?m=1

________________________________

2)

This is Dr. Anthony Kalloo who says that for those patients having unexplained pain post cholecystectomy (gallbladder removal), like us pankiers, that we are often told "ITS IN OUR HEAD" or that "WE ARE JUST HAVING PROBLEMS AT HOME" when in fact it is SPHINCTER OF ODDI DYSFUNCTION (SOD). Video is approx. 2-3 minutes or so:




________________________________

3)

Regarding treatment of PANCREATITIS in the emergency room. This is stating how we SHOULD be properly cared for. (Instructions for doctors is midway down on the page). A quick read:


http://www.acep.org/MobileArticle.aspx?id=65139&col​l_id=693&parentid=740

________________________________

4)

Dr. David Whitcomb of University of Pittsburg, PA (UPMC). He does an 8-part discussion with a wonderful pancreatic doctor in FLORIDA. Approx 8-10 minute or so segments:




________________________________

5)

Dr. David Whitcomb discussing the pain issue and alcoholism not being the main cause, as is so COMMONLY blamed for causing the disease of pancreatitis altho only approx 2-3% of cases from alcoholics are from those drinking heavily daily.

Approx a 2-3 minute video:




-------------------------------


Drs need to understand ALSO that some patients have to visit er's many times as this most painful disease causes an over exerted feeling as if youll stroke out.

Its also incredibly difficult dealing with the pain of both SOD and PANCREATITIS together.

And since most hospitals, hospitalists, and er dr's do not really (and cannot really) do much for us, we are in a constant state of flux... Never really getting a total grasp on the situation. There are NOT many drs who will or can help us as its so rare and fairly new. Most er dr's we speak with havent a clue and we end up schooling them quite often, as they themselves have even admitted during an er consult.

We only go to the er out of last resort because we know that our odds of even getting a knowledgable AND COMPASSIONATE dr are rare in itself, thus leaving us with little care at all.

We NEED to be having our pancreas flushed and NPO for at least 3-7 days and pain control that is equivalent to our own personal tolerance and many of us do receive pain mgmt and have for yrs so your .5mg's (point .5) is the equivalent to an asprin sometimes, so do not think its doing us any favors.

Sometimes we get a blessing of a fairly decent day, so just because one minute we may actually SMILE (oh noooo... They smiled in the ER), doesnt mean that we necessarily are doing well. We have justs had to manage a life around this pain. We have carved out a way to DEAL with all of its aspects as best we can and im so proud of everyone in the groups and of myself for having nothing but adversity thrown at my feet, but yet surviving as i have done!

I DIGRESS...

You may not know that we are often made WORSE by the neglect we receive in an er or an inadequate admit because we dont receive the same level of meds that we even take at home.

7.5mg by mouth is equal to 1mg of IV dilaudid. As a pharmacist has quoted me and as i have seen online.

My dr agree's with that also.

So if i have had numerous surgeries and am on 8mg's every 3 hrs as needed at home, your 1mg isnt doing me anything more than barely keeping me where i am if still at home---id be left STILL IN PAIN.

And making us eat after only a day or two of NPO isnt helping us either as we would be flaring even as youre writing up our discharge papers! But you dr's want that meal devoured so you can kick us out ASAP! Its HURTING US!


We all have an incredibly difficult time finding knowledgable drs/surgeons to help us and travel is a must. But why cant we get the most basic care for a flare locally? Even the pancreatic surgeons state that ANY HOSPITAL CAN HELP YOU WITH A FLARE by offering those things ive listed above (NPO, pancreas flush with IV fluids and PAIN CONTROL).

They say its so basic that theyre very stumped as to why a dr, even an er dr, does not take us on. Our care may not be profitable, just giving fluids and meds, but havent we and our insurance paid you enough with ALL OF THOSE TRULY TERRIBLE ER VISITS WHEN YOU ABUSED US, assuming and accusing us of being drug seekers???? I think we are owed...

Those newbies coming into our groups are lost like we were at first. Theyve looked for answers for yrs also and been abused, not understanding why also! We are always in shock at how we all have had the same evil treatment. Some told to GO SHOPPING as a recommendation to help them "recover". But besides that being utterly stupid and mean, did the dr even know there is no cure? Theres no recovery!!!!!!

And why the attitude? Why so evil to us? We do suffer more than cancer patients.

A dr, who is a pancreatic surgeon, has stated that cancer patients are the lucky ones as at least they get to die, whereas we will go on suffering indefinately.

Think about these things as you chuckle about how you throw DROPERIDOL at them... A drug that sent me into horrifc added pain for 6 hrs, making me feel as if i was needing to climb out of my skin. Its a cruel thing to do to someone who IS NOT NEEDING A PSYCHIATRIC TREATMENT!!! And if also guess borderline malpractice! Youre punishing SICK PEOPLE! Extremely SICK PEOPLE!

You may think its all in our heads, but you would be oh so wrong.

And theres 8yr olds also suffering with this so please STOP this alcoholic garbage!!! Drug seekers and narcotic bowel... Lupus and fibromyalgia .....

As far as the alcohol thing goes:

As dr whitcomb of upmc states, only 2-3% of cases are from those drinking heavily.

And...

Medicines cause this as do hereditary issues and falls, etc.

You even hear these drug commercials on tv stating that these meds can cause pancreatitis! And go on to add that it, pancreatitis, can also cause death!


An why do only 1/3rd of us FINALLY get an ERCP? Its not gonna show up in your zillions of catscans!!!

We only ask for compassion and awareness as we dont have the answers and you dont either.

But we certainly do not deserve this horrible treatment especially as we have to spend our days desperately searching for a dr who is within a few states away who has even a small likelihood of helping us. The daily pain of those of us who flare with each bite is horrendous so its a constant battle of fighting and enduring!

It shouldn't have to be so when we finally break down and go to the hospital in such bad shape from waiting them (flares) out to see if theyll calm on their own.

To be discarded as trash by a dr at this point is devastating and inhumane.


Do you realize that some even go so far as to have their pancreas taken out (the tp-ait) out of utter disgust and despair because no one is ever helping us?

And when a third of those surgeries go wrong, which they do, WHO IS GOING TO HELP THEM THEN?

We hear thier stories of sadness and neglect. We know it may be OUR future.

The only decency we see is between ourselves in our support groups and within our families. And your trying to turn our families against us is also hideous and damaging to a point youll never know. All because you dont have the education needed to properly diagnose us.

Other than our groups and families, we are swept under the rug, misunderstood, neglected and abused at every turn.


This is why hearing you talk like this is just so... Heart wrenching.

How could it not be? We know we get treated like slime in your er's 98% of the time, thru no fault of our own...

We always wondered WHY? Why do they treat US (and only US) like this, while other patients get treated like gold. Because we "dont look sick" "because we can eat"? Well over the yrs, after tpn and tube feeds fail, we are told to eat but must medicate in order to "handle" the outcome, which is horrible horrible pain! So just because someone eats with this disease, doesnt mean theyre healthy! We must eat or continue to become weak and deconditioned!

We cannot be NPO indefinately! Which is why your help is so needed! IV fluids and being NPO for a week resets our clocks, so to speak. It gets us back to where we can handle it at home hopefully. THIS BEING THE MOST IMPORTANT OF ALL!!! Because if we continue eating with a "super flare", our health deteriorate so quickly and we feel like we are having a heart attack!!!!!!!!! Its a quick spiral downward!

Sphincter of Oddi Dysfunction is kind of a mechanical problem and many of us have had to wait yrs for a diagnosis because of the discarding of our er dr's.

Had we been given true care, a followup with a truly knowledgable dr, we would not encounter the amount of permanent damage that we do when left neglected for yrs... Yrs of continually running to your er's out of desperation!

I hope this has helped you and us! I truly do because i know some dr's arent taught about our disease so they automatically think we are nuts and lying but when you do this thing of automatically ASSUMING the worst, you are causing someone to not only suffer that day, but you are causing permanent problems that result in an even worse condition... Think about what ive said.

I know your job is seemingly judge and jury... babysitter, janitor, food service worker, and pastor but you have to make room for us as we are truly your most critical cases. And this disease ONLY GETS WORSE IN TIME. Please HELP US!

We havent done a thing wrong but yet we are looked down upon without saying a single word!



Well now we know why! I highly suggest doing research if you plan on being successful as a physician because with bad pharmacueticals, possible environmental causes, GMO's/processed foods, and the economic issues forcing some into eating this poison, youre likely to see many more cases in the future! Especially with it also being a hereditary issue. Who knows how bad things will get???

And knowing how your diets seem to be leaning, (ive noticed the food available to you in the hospitals), YOU YOURSELF COULD BE A VICTIM OF THIS DISEASE!
 
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It had to be said... If we (people with this disease of pancreatitis and sphincter of oddi dysfunction) are to survive! Please indulge me ---this one and only time, i beg you.
 
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Holy ****.
 
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NCPSN The National Chronic Pancreatitis Support Network P.O. Box 50425, Sparks, NV 89435

Dear Doctors,

We write this letter to you to give you a better understanding of chronic pancreatitis and what we as patients are going through in hopes of improving treatment of this very painful disease. It is important to know that chronic pancreatitis presents itself in many ways and often can be invisible or missed on EUS’s, MRI’s, ERCP’s and other scans until far advanced. Please do not let prejudice, bias or fear of the Drug Enforcement Agency get in the way of treating us: listen to us, look at our medical records - most of us have a library of medical records. Please think about the fact that we are usually at the end of our ropes when we come to see you for relief of pain and nausea and the last thing we feel like doing is trying to explain our illness to you while we are in such extreme pain. Look at family history of digestive disease, autoimmune illness, trauma and cystic fibrosis, and by all means do not profile us as if we are all drunks who caused this disease ourselves. This disease does not discriminate; it affects men, women and children and is equally horrifically painful.

It has been many of our experiences when visiting the emergency room to be treated somewhat less than human with remarks being made to some such as, “You did it to yourself.” It is both shocking and disheartening to be treated in such a manner by the very person or people that you are relying on to help you, not to mention highly unprofessional on the doctor’s part. Some patients are sent home in the same horrific pain they arrived to the ER in because of patient profiling by uneducated medical staff in the area of chronic pancreatitis. Many things can happen during a flare-up or attack that can be life threatening and we need to be able to rely on ER staff to be able to help us. There is no shame in realizing that you are unable to help a patient but there is shame in not getting the patient to a specialist who can diagnose, evaluate and treat them. Many doctors (even GI doctors) do not know you can live without your pancreas or about the TP/AIT surgery or that when a patient comes to the ER in a flare-up to immediately order NPO and help with pain and nausea control. Patients who have opted to have the TP/AIT are often left with no aftercare. More research is drastically needed in the area of chronic pancreatitis.

Clarification and Suggestions:

1) Contrary to what you may think, our labs and CT scans can show normal and our enzymes are not always elevated when we are having an attack leaving us in excruciating pain.

2) The pain we actually experience when we are having an attack or flare-up is the most horrendous pain most of us have ever experienced – that is right, more than natural childbirth, more than gallstones and according to Dr. David Whitcomb of the University of Pittsburg, Pennsylvania, more painful than cancer or just about any other medical condition you can think of.

3) Pain is the 5th vital sign and is always supposed to be assessed at every medical visit because it is a hallmark risk for patients with chronic pain.

4) According to a 2009 NAPS2 study, the causes of chronic pancreatitis are as follows:

· Genetic 24%

· Idiopathic 42%

· Hyperlipidemia & Autoimmune 4%

· Obstructive 9%

· Gallstones 3%

· Alcohol 15%

· CFTR & Spink 1 3%

· Spink 1 4%

· PRSS1 3%

5) Please remember we are not all suffering with chronic pancreatitis due to excessive alcohol consumption - as you can see the numbers are actually low in that area compared to other causes, so we ask you to stop treating us as though we caused this disease.

6) We are not drug seekers; we are in real pain and are coming to you for help. Please, listen to us.

7) Smoking is a major risk factor in causes and further damage to the pancreas, so please council your patients on stopping smoking and consequently possibly reducing the rate of progression.

8) We are all different therefore we all present differently and thus treatment may need to vary from patient to patient.

9) Chronic pancreatitis patients can also suffer from PTSD after enduring this disease for a long time. Large scale studies show at least 10% of suicides and possibly as many as 70% are linked to chronic illness or unrelenting pain.

10) Patients suffering from chronic pancreatitis and other rare diseases often need emotional/mental health support as well as medical help.

11) It is psychologically draining to be blamed for every symptom and side effect that goes along with this disease.

12) We know our bodies; trust what we are telling you.

13) Please do not shove us off to pain management; we need a doctor that can treat us for all of our symptoms, not just pain control. We are weary and often are made to feel like criminals for needing pain control.

14) Remember that this disease affects our families, too.

15) Please refer your chronic pancreatitis patients to support groups, as they can be a life line for us.

16) Don’t confuse CP with an eating disorder; we just have trouble eating and our food is not absorbed, leaving us often malnourished.

17) Providing rare disease patients with an advocate is a must.

18) We would suggest that all ER doctors or any doctors that treat rare diseases spend some time doing rounds seeing those patients.

19) We would suggest a national data base tracking chronic pancreatitis patients for much needed comparison research.


In closing we would like to remind you that we know and understand there is no cure for chronic pancreatitis, but we are all human beings that deserve to live a life that works for us. Our lives have been ripped apart by this disease. We are not asking you to fix the problem, only to cease all judgments, trust our symptoms and treat us with compassion. We encourage you to view Dr. David Whitcombs videos on chronic pancreatitis on YouTube.


*Everything we have discussed in this letter came from patients in chronic pancreatitis support groups.




The National Chronic Pancreatitis Support Network

P.O. Bo 50425, Sparks, Nevada 8943



*This letter is in no way meant to diagnose or treat any illness; it is strictly for educational purposes.
 
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Look, whether you are one person or multiple people sending the same stuff you are missing the point:

1. WE ARE NOT TALKING ABOUT YOU!
- multiple people have tried to explain this to you. Either you aren't reading the responses or are choosing to ignore them.

You are finding an argument where there is no argument. We more than understand the nuances of diagnosing chronic pancreatic. The medical information you are posting here is on the level of your average 1st year medical student.

I just think you don't understand the problems we're talking about and you assume that we're talking about you.

Your behavior is liking showing up in Spain knowing a handful of Spanish phrases and accusing everybody who stops to help you of laughing at you and making fun of you. Then when the try to explain you shove some 1st grade level Spanish phrasebook at them to "prove" that they're making fun of you.

...or you're just some internet forum troll who gets their kicks by wasting peoples times pretending to argue on the internet.

Either way, I don't have anything else to contribute
 
They all need to get the ban. It's the same person opening multiple accounts and posting the same propaganda. Moderators please ban these troll(s) and put an end to this!
 
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Solid posts.. LOL.. why did I come in here.
 
Why is it so hard to believe there is more than 1 person in this thread standing up for patients with this disease AND that we all also are finding most of the statements in here vile and abusive?
And dont say its not about "you", when we are pancreas patients and we all have our very similar horror stories of treatment that coincides with the very similar dirty little tricks some of you claim to use on pancreatic cases...
Such as droperidol. Not offering pain meds...(real pain meds... Not dilaudids new sound alike /look alike DILAUMED).
I hope youre proud of yourselves in MEDICALLY ABUSING a very sick patient all because you arent on the skill level needed to properly "fix" them. Im praying it isnt your ego eliciting this evil behavior! If so, please find another career!
I had actually spent a year and a half just trying to get diagnosed and in that time alone, droperidol WAS used, i was told all of the things SOME OF YOU BRAG ABOUT DOING. With your telling a pancreatic patient you have no intention of lifting a finger to help, obviously youll get them to "elope". But youre causing more damage to occur. And forcing them to go elsewhere to get the NECESSARY treatment that is so basic... It blows the mind to think of how easy we are to treat and yet we have one of the worst diseases out there. How can you talk about us this way? Do cancer patients get treated like we do? Nope! Do cardiac patients? Nope! What makes us so different other than that YOU arent up to speed on our very rare disease! Thats the only difference i can see.
Or is it that you enjoy seeing someone suffer greatly while you dangle a vile of relief in front of them as you tell them they cant have it because they dont meet your personal idea of what a disease should consist of?
Remember... DONT SAY IT... You are talking about US!!!
Because this is the treatment we have all received approx 90% of the time. And we hear from others in our worldwide groups, who also have the exact same outcomes in their ER's and while admitted. So do not say its not us to which you are refering!
Even a hospitalist or a GI dr isnt always up to speed oddly. So its not just happening in the ER!
Either way...
We are the butt of your jokes and the victims of your abuse and neglect.
You drive people to leave AMA and then have the audacity to tell others on here about how cruel you actually were as you pat yourselves on the back saying you did something to be proud of. What you did was purely evil and you should be ashamed of yourself... At the very very least!
I know your jobs hard and its mental and physical but we arent trying to make it harder. We are trying to inform you (yes you who claims to not need informing), because its a constant problem for us so it is happening, you are doing it to us, so you are the responsible ones as a whole, and it needs to stop NOW!
Educated yourselves. Stop reading 50yr old journals/articles and catch up. Our very existence depends on it.
Ive had so many people pop up in a support group, feeling like death, as we do most times, and wanting their lives to end over this torturous existence of constantly trying to find a dr to 1)HELP THEM THRU THEIR FLARE and 2)NOT BE A TOTAL JERK, THROWING THEM INTO AN EMOTIONAL TAILSPIN.
Havent we been thru enough? Havent our poor families worried enough? Driven us cross country enough? Lost enough jobs due to never getting any help or sleep as they sat in those awful chairs in the er... Just to end up having an unloving dr cast us out into the night after sitting 8 hrs in a waiting room? And then having to go find somewhere else that does truly seem to care... THIS TIME POSSIBLY? Havent we searched enough? Havent we spent enough? Havent we been stuck with needles enough? Havent you made enough money off of us yet? What more do you want?
So,
Realize a painful flare cannot just be ignored. Your lax attitude comes from not knowing real pain... But it cant be dismissed!
And dont expect a pancreatic patient to just sit there and take your neglect. They all figure you out eventually and realize that you just dont care. Its pretty evident in the first 20 seconds or so. You hear that a pancreatic patient has walked thru the doors and you have already decided we are leaving asap... Youve already formulated your plan of attack right? And you may even fake running our labs... I know this one because its been done AND admitted to me and my spouse when asking for a copy of them for my family dr.
Some of us have had whipples and sphincterotomies, etc... And we even carry our records with us but no one cares and no one believes we have a real disease. STILL!!!!!! What is that?

And they certainly dont CARE for us.
They call it Heath Care! Its when you and your patient work together to find a solution to an urgent medical matter. It may not be a life and death matter but it feels like it is. It is UNAVOIDABLE, our coming to the er.
We should not have to fear coming to you for help and its not the environment where you play all of these little evil games to try to outsmart us so we will leave quickly. Youre OBVIOUSLY DESENSITIZED from being around so many dregs of society.

Thats not our fault though. Your job is to help us. Give us the benefit of the doubt. We spent a huge fortune on these terrible wasted er visits. Earn your money! Stop making it some sort of a game please! We probably wont live very long. Our QOL is in the toilet as it is. And we wait and wait and wait before darkening your doorstep.
Its not COME ON DOWN TO THE ER... Its I CANT BELEIVE I HAVE TO GO TO THE ER AGAIN AND BE ABUSED!!! Thats the thought that we all have!
Why does having an attack/flare have to entail putting up with so much ignorance and intolerance when it is not us who is making your job difficult?
 
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No one is going to read all that. You are clearly manic and/or bipolar from your writing style. You are exactly the type of person we are talking about, and for whom there is nothing we can do anything to help. Your chronic pain is exacerbated by supra-tentorial issues for which you have no insight. You also may want to know, that when you write a complaint letter about your next ED physician (who I'm sure will be unable to satisfy you without near-lethal doses of dilaudid), try to keep it under 1000 words without the insane rambling. Hospital administration and the medical director will take your complaint much more seriously without all the crazy.
 
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Please stop refering to me and my fellow sufferers as trolls. We are all very ill, dont get much rest or relief from this disease and writing these statements out to you, pleading for change takes energy we have to work hard to muster most days.
Getting a shower is a good day! Just saying... Youre so rude and its not cute.
Im sure you guys like to good around as your job is super stressing but on this subject, its not funny.
Make fun or torment someone else who is worthy of your mean and degrading comments.
We have suffered too much for you to not take us seriously yet again... Its not ever gonna stop, is it ???
We wont ever get help...
 
No one is going to read all that. You are clearly manic and/or bipolar from your writing style. You are exactly the type of person we are talking about, and for whom there is nothing we can do anything to help. Your chronic pain is exacerbated by supra-tentorial issues for which you have no insight. You also may want to know, that when you write a complaint letter about your next ED physician (who I'm sure will be unable to satisfy you without near-lethal doses of dilaudid), try to keep it under 1000 words without the insane rambling. Hospital administration and the medical director will take your complaint much more seriously without all the crazy.


One thing all you doctors have in common is an aversion or fear of being confronted by a large portion of the citizenry which may roll into YOUR er. Your responses have called us trolls, liars, stupid and now manic and/or bipolar. Rather than complain about your sore feelings that we patients have stumbled upon this forum, why don't you read some of the posts here - how can you not hear our cries for help? We don't want to be afraid of the er. We don't want to avoid the er too long and end up in icu. We don't want to end up dead - as a 32 year old young lady in Indianapolis did last week. Please, take off your gloves, lay your ego aside just for a few minutes and listen to a couple of Dr. David Whitcomb's video presentations - because he knows more about the pancreas than you and we all know how much you guys hate to be told by patients that it is YOU who are treating them poorly with your stereotyping and social and racial profiling.
 
One thing all you doctors have in common is an aversion or fear of being confronted by a large portion of the citizenry which may roll into YOUR er. Your responses have called us trolls, liars, stupid and now manic and/or bipolar. Rather than complain about your sore feelings that we patients have stumbled upon this forum, why don't you read some of the posts here - how can you not hear our cries for help? We don't want to be afraid of the er. We don't want to avoid the er too long and end up in icu. We don't want to end up dead - as a 32 year old young lady in Indianapolis did last week. Please, take off your gloves, lay your ego aside just for a few minutes and listen to a couple of Dr. David Whitcomb's video presentations - because he knows more about the pancreas than you and we all know how much you guys hate to be told by patients that it is YOU who are treating them poorly with your stereotyping and social and racial profiling.

Since when do chronic abdominal pain patients have any specific race? Calling people racist means you automatically lose the argument. As we've been trying to tell you, we cannot help you. It's like you have a Chrysler and you take it to a Chevrolet dealership for service. What you want we can't provide and you are in the inappropriate place to do it. You are a race-baiting troll.
 
Lock thread. Nothing more productive to say.
 
Since when do chronic abdominal pain patients have any specific race? Calling people racist means you automatically lose the argument. As we've been trying to tell you, we cannot help you. It's like you have a Chrysler and you take it to a Chevrolet dealership for service. What you want we can't provide and you are in the inappropriate place to do it. You are a race-baiting troll.

I probably should not have called you racist, though the ER waiting room is full of a wonderful variety of colors, types and languages. Elitist, judgmental and choosing to wear blinders would have been more appropriate verbiage.
 
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What do we want? ....DILUADID! When do we want it? .....NOW! Chronic Painers of the world.....UNITE!
Wow...really? Why are you even in the medical profession if you are so jaded?
I had necrotic pancreatitis last year and have been in pain every since.
Going to the er is not something I do because I like to or want to. It's my last resort when nothing else is working at home.
I have to have ERCP's every two months to open what's left of the once healthy pancreas I had.
Yep, I can smile through the worst pain. I even can text my family to let them know that once again I have been sent to the dreaded er. But that doesn't mean I am not in pain.
My enzymes rarely elevate now, and I travel four hours to IUPUI to have the ERCP's. Then I spend an average of 2 days to 2 weeks inpatient.
I've had great er docs and I've had docs that don't know their elbow from their a$$ hole... but seeing this thread only strengthens my belief that most doctors, no not all, could give a rats butt about what we really go through.
I used to say I wouldn't wish this on anyone. Now... I wish every doctor or nurse that has treated me wrongly would have it...just once and just for just long enough for them to experience what I, what we live with every single day.
 
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troll_toll.jpg
 
Oh.. ouch. That really hurt. Ignorance is not the topic here in case you hadn't noticed.
 
You chronic panc'ers have missed the point of this thread and the content of all the replies by a huge margin.

Please re-read Birdstrike's post. Then read it again. Then maybe once more, slowly this time.


Fact 1-There are a tremendous amount of people with terrible pain from medical conditions that need opiate pain medications that don't abuse them.

Fact 2-There are also a tremendous amount of people with terrible, sometimes life-threatening addictions that will lie, manipulate and even break laws to obtain medications inappropriately who do not realize or want to acknowledge they're in dire need of substance abuse treatment, all of which are characteristics of the disease of addiction itself. These people are overdosing, by accident, in endemic numbers.

CDC: 41,000 drug overdose deaths in 2011, 30,000 of which were accidental (80%) and not intended by the people who were taking them, with 20,000 being from legal, prescription drugs.

http://www.cdc.gov/homeandrecreationalsafety/overdose/facts.html

The problem is that patients don't walk into an ED with one of those labels stamped on their forehead. And patient #2 will direct every single ounce of their will and energy to be perceived as if they are patient #1. This makes it incredibly difficult for doctors, nurses and patients alike (particularly patient #1). Making it even more exceedingly complex and difficult, there are many patients with both features, who have terrible pain from a disease, yet may have a terrible underlying addiction also, that they are doing everything they can to hide from their doctors, family members and from themselves.

So while it's easy to say "doctors are bad" because they may get frustrated with having to deal with this impossible dilemma constantly, the reality is that most are trying their best to do the right thing. They want to help those in need, whether that means giving pain medicine to those that need it, or not giving it to those who may be harmed by the medicine by feeding an addiction, who need substance abuse treatment, which many will refuse. We are all, doctors and patients alike, caught between a rock and a hard place with tens of thousand of people dying every year from their addictions. The best doctors do care, and caring does not mean indiscriminately giving out opiates while pretending there is no problem, addiction is a myth and that no one is hurt by opiates. Making matters worse, is that doctors are now being held liable for overprescribing, including criminal and homicide charges, in increasing numbers.

http://mobile.reuters.com/article/idUSTRE78D3P620110914?irpc=932

Bottom line: Addiction is a horrible and widespread disease/societal-problem and it makes things very difficult for doctors, and patients alike.
 
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As a reminder:

The main purpose of SDN's forums is for physicians/medical students/health care providers to meet and discuss issues of interest of them. It is not for patients to ask for medical advice or to lobby for a particular therapy/treatment.

Closing.
 
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