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
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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:
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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&coll_id=693&parentid=740
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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:
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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:
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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!