My Story – Stuck Between Pancreatitis and a Hard Place

My Story – Stuck Between Pancreatitis and a Hard Place

By David K. Lord.

Acute pancreatitis is primarily treated with supportive management in the hospital. Generally, patients receive intravenous fluids and pain medication. In up to 20 percent of patients, the pancreatitis can be severe. The patient may need to be placed in the intensive care unit because of damage that has occurred to other vital organs such as the heart, lungs or kidneys. Some cases of severe pancreatitis require surgery to remove irreversibly damaged parts of the gland.

Considerations in Using Opioids for CP Pain – any complaint of pain should be recognized as a significant problem if it affects physical function or quality of life. The etiology of chronic pain is complex, and treatment usually requires both a pharmacologic and a non-pharmacologic approach. Effective management of chronic pain is important, because chronic pain is a leading cause of disability and has high societal costs. When utilized for pain management, opioids should be started at the lowest effective dosage and titrated slowly.

In addition, chronic pancreatitis can be challenging to treat. Physicians will try to relieve pain and improve nutritional and metabolic problems that result from pancreatic function loss. Patients are generally given pancreatic enzymes and insulin to supplement what is not being secreted or released by the pancreas. In some instances, blockage of the pancreatic duct would require a surgical drainage procedure.

I hope you can help. It is very scary to have a PCP insist that pain management has to be done in an ER. Especially when they tell me I will have this condition for the rest of my life. The following is a summary of my experiences and concerns to date. It is my understanding a law governing medical abandonment entailing failure to provide necessary care within the physician-patient relationship is essential for a physician to fulfill their duty to provide such care. This leaves me to conclude that I maybe a patient not receiving the appropriate treatments.

I am writing to you in the hope that something can be rectified on my behalf. I was diagnosed with acute pancreatitis in the summer of 2017 by my PCP. After testing concurred with the doctor’s initial diagnosis, no follow up treatment was implemented. He refused to write any prescriptions for pain. At that time I had private insurance with limited benefits. Without his concern for follow up, I decided not to pursue any further consultation with this clinician. Not too long after, I proceeded to seek another physician, however with no improved outcome. So from 2017-2018, I have been forced to go, and on occasion, be admitted to a hospital to relieve my pain. I believe it has been six times thus far. Repeated morphine and other pain medication utilizing additional cost reoccurrence by repeating the same tests done on each visit. My research shows me a PCP should help provide pain relief in the treatment options by utilization of lower dose opioids. The Ohio and federal law provides a physician the affordability to dispense such medication. Especially when I was advised that my condition would be with me for the rest of my life. I have been seen by three other physicians since my hospital stay due to my PCP not being available for a visit. The doctors prescribed Creon and Neurontin to aid in the treatment. I thought there was no treatment plan!

My complaint, since it was event on my last day in the hospital between on November 24, that someone, other than a doctor, with common sense helped me with after-care medication. A nurse practitioner on my medical team at the hospital had done such and provided a script for a five day opioid (Tramadol) to take home in case I had a relapse after discharge – sounds reasonable and far less expensive to me.

By this refusal of out-patient treatment, I have been forced to be treated in a hospital setting only for ongoing pain. It has cost me and the Medicaid insurance agency approximately $70,000 dollars so far. My Medicaid insurance expired November 30, 2018 leaving me uninsured until January 1st of 2019, in which I will be utilizing purchased private insurance. With a high premium and a restricted budget, it leaves me in peril if alternative treatment cannot be provided. I have spoken with my PCP on numerous occasions and it is the same response every time, “I cannot and will not prescribe pain medication, you would have to go to the emergency room”, absolutely ludacris! With chronic pancreatitis and lingering pain issues for the rest of my life, I need an advocate. Under the current guidelines that I have read – and the information I received from the NP – there should be no question as to what the patient needs. I could write further and if more information or documents are needed I would be glad to provide them.

I had pain starting to generate on Tuesday 12/11, I took my medications and decided to see my pain management specialist working for Cleveland Clinic at Euclid Hospital in Euclid, Ohio. He advised me that he will not prescribe anything because he cannot afford to have his license put in jeopardy. He prescribed Neurontin, increased the dose, and advised me to seek my gastroenterologist for further treatment. And he suggested he would be referring me to a Chronic Pain Foundation. This doctor has my medical diagnosis and still refused to help treat me with something more potent than Tylenol, claiming it would do further damage to my pancreas. Obviously, he hasn’t read the guidelines and law pertaining to dispensing appropriate medications. I cannot understand how a specialist who charges 500-600.00 dollars for short visit, then violates a person’s quality-of-life situation. It is an ethical and legal right to receive quality care. I have not, so far! I am at a dead end until another episode and a trip to the ER costing thousands of dollars instead, where treatment could be provided by a so called specialist instead, or help from an advocate.

A survey shows doctors shunning chronic pain patients… “I have been told by more than one doctor that they cannot legally prescribe over the guidelines. They are very concerned about being investigated and as a result refuse to treat pain with an appropriate dose of opioids,” said another patient. Moreover, “We have two problems in the U.S., a drug addiction problem and a chronic pain problem. We should not be attempting to treat one problem if that will also create a worsening problem in those that suffer from the other,” a primary care doctor wrote, “We need to work on a solution to the addiction problem while still allowing those with chronic pain that need the opioids in order to sustain an acceptable quality of life.” I questioned my dentist about the failure to help pain. He stated that he “writes them all the time – nobody should be in pain. As you read the hundreds of letters you would be horrified.”

What’s next, no pain relief for terminal patients?  The public should be outraged – any of us could be next.

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Authored by: David K. Lord

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Cheryl Marosi

I believe when there was a set up to claim there was a supposed opiod crisis, government officials were dipping into investments for the legalization of marijuana. Ironically, the shut down on opiods began, around the same time the push came to force people to buy marijuana for pain management. No more opiods yet tell people to buy marijuana for pain relief. As they always have said…FOLLOW THE MONEY AND IT WILL TELL YOU THE TRUE STORY!

After being treated worse than an animal while hospitalized with acute pancreatitis caused by surgery, I treat my pancreatic flares at home now. My physician understands why. I refuse to go back to the hospital unless I am unconscious.
I stay as hystrated as possible and take my meds as I can. It’s better than what they did for me.

Carys

This is an unbelievable but unfortunately all too common story. I too have had to go to the ER six times since December 1st for similar issues. My treatment there varies. That a society can support the inhumane treatment of people in pain is disturbing, but the more we are mistreated the more we must stand up. I know that is difficult for me because the more active I am, the more medication I need, and I’m often bedridden. Stand up though we must, and I just do not see enough sense of urgency from this organization at this critical point in time. Why are there not rallies and other grassroots efforts from the patients and people in families afflicted by pain and this terrible treatment? I’m in Washington DC and would be able to lead an organized effort, or resistance. What am I missing?

Christine Hawkins

Pain management , were can you get pain management. I’ve herniated C6 disc all L4 L5 S1 2 back surgeries this latest episode I went to the cardiologist and they said I had a blockage which was causing all the pain in my leg so they opened up some veins and nothing happened you know why cuz it was my sciatica. I have Scar Tissue on my sciatica I’m constantly blowing disc now I’m blowing disc in my neck and they tried to tell me that I had a torn rotator cuff and that I needed surgery this is the kind of care that I’ve been getting I finally got my GP to prescribe pain medication for me and my Walmart pharmacist called my mail order pharmacy and told them not to fill my Drs scripts period. Has I mot of horded what I did
I don’t know what or were I would be. The pharmacist at Walmart also made me sign a piece of paper I don’t even know it was for but it was for Narcan she prescribed Narcan for me and you get it by prescription only set an alarm when did she blackballed me from my mail order pharmacy she’s got me on Narcan which is showing up online prescription history. and her notes to my online pharmacy was that I was an opioid addicted pain management patient.if you try to get off pain meds you pay cash to PC Physicians $350 first visit $200 every month after that I don’t ask him for a walkout statement cuz they won’t give you one so you can send it to your insurance company to get reimbursed. They are just as bad as the pill mill clinics. I tried not to use pain meds. The pain is chronic. the last three pain management doctors I have seen had wanted to put one of those things in your back that you hit it every time pain starts I have a really bad problem with scar tissue and I really don’t think that would work but you can’t tell them that because they know everything. Unless you have pain that makes you want to vomit. Don’t tell me what I need. The government is going on the wrong direction here. I don’t believe it’s pain manage patients. Its the guys on the s

BeckyF

January 29th, Don’t Punish Pain rally, nationwide. Please join the FB group for your state.

Cleveland Clinic personal experience a rating of 1-10, 10 being the best, would be a 4

Patient 0

Just ridiculous ..we need the Chronic Pain Patients Protect Act NOW

Marlene

The first problem is that you were in the Cleveland Clinic system. They will not treat with opioids and treat everyone who needs them like a potential addict. Get far far away from that place for chronic pain. I live in Columbus and see a pain management physician for my chronic pain condition as Ohio State plays by the same infuriating and dangerous rules. Good luck and email the guy from that other post who lives in Cleveland area who might be able to help.

Alice Jones

The chronic pain patients are lumped together with drug addicts, polypharmacy abusers,
and polyphysician seekers.
The powers that be didn’t considers us a physician’s patient. They saw us as a drug addict.
People have died from drug overdose but I am not in that category. The powers that be made decisions on a population that are addicts and put us in that category. No consulting physicians, no consulting chronic pain patients, not nada nothing.
Just drew up guidelines made them mandatory or punishment to those who want to help chronic pain patients.
There is no Plan of Care, giving the physician the respect due him in decisions, allowing the patient no dignity we become shamed, demeaned, disrespected, cut off from any help, and broken the code of the physician to “first do no harm”. So here we are hanging in limbo because the powers that
be made decisions that brought shame, fear, loss of jobs, and totally rearranged our lives that have become dysfunctional.
This was done to teach us a lesson on how our lives should be, could be, and they are going to make sure we follow there rules or we will be punished. The powers that be knows what’s best for me becauuse they have stats to prove it.

Randy Lamartiniere MD

Untreated severe pain meets all the criteria for malpractice. Standard of care for acute and chronic pancreatitis includes pain treatment. Obviously intentionally refused to prevent excessive suffering. Also inhumane and unethical.

Peach O'Neill

Hello Mr Lord,
I have been through the mill too, for the last six years! First of all it took almost one full year to get a diagnosis of chronic pancreatitis, after seeing many doctors and going to the ER for pain almost every month…could not eat any thing, lost 30lbs. I never had a problem getting pain meds from my PCP or the ER, but that was Six yrs ago. Yes. Things have gotten bad for receiving pain care. Four years ago I moved to South Carolina from Arizona, where they were starting to get fussy about me being on opiates, had to sign docs claiming I would not receive prescriptions from any other Dr. Or ER unit..yes it makes you feel like a criminal. Here in SC, my new PCP really put me to the wall and accused me of being an addict! Fired him! No-one would prescribe ongoing pain meds here, you have to get a referral to a pain management clinic. Okay- I had no insurance and no income…so had to rely on the ER and had dozens of hospital stays. Each year it got worse, harder to get relief from even the ER! Stays in the hospital were marked by having to fight with the charge nurse to have my meds released! Impossible. I finally got disability and Medicaid and was seen by the pain clinic. They were very professional and thorough..put me back on pain meds to manage my pain at home. Yes, opiates! After one year of that and some hospital stays, my gastroenterologist agreed to try a Ecrp procedure to check my sphincter duct from the pancreas and the duct from the liver that connects to the intestine. Sure enough both ducts were blocked! He preformed a sphincterotomy and I literally was pain free immediately! It has been one year, and I rarely have pain. I am off meds and do go to the ER if I have a bad episode, where they do administer opiates to relieve the pain, but no prescription. Yes, everyone in the Medical world are extremely uptight about overdosing! And it comes down from the top. Compassion and empathy are out, fear is the new drug!

M W

Mr Lord first I would say I’m so sorry that you are having to go through this kind of barbaric treatment. I’m responding because at the end you said what’s next no treatment for terminal ill pts. Well, it has already begun. I had a friend that passed away from cancer in November. It was very agressive & about 2 weeks before she died the pain got so bad she went to the ER in our closest hospital. We both worked there for 3 decades. They refused her anything for pain because it wasn’t in their policy. So after she was sent home & still in excruciating pain her husband took her to a different hospital ER about 35 miles away. They refused her pain meds also! Luckily she had friends who knew how to get hospice orders rolling from her oncologist over 110 miles away. I was not only furious but dumbstruck that any hospital would send a cancer patient home with no relief! This is our new normal. I’m glad I’m not a medical professional any longer. I’m also a chronic pain pt. I have had my share of being undertreated & made to feel like a drug seeker out trying to score some street drugs. The bottom line is to deny anyone in pain the medicine they need can only be considered barbaric!

Gretchen

I’m so sorry for the issues you are facing I’m also in Ohio and have faced many challenges myself as a permanently disabled and pain managed person God Bless you and I will pray for you that we may survive the Constitutional violations that are deemed upon many in our state and other states I would like too know where the law went too not practice medicine without a licence most the law makers in this state are guilty of this prisonable offence and need too be tried and jailed I have no respect for any of them and the worst part is we are all being punished even the doctors who have worked hard too practice their trade for no reason other then too save a bunch of selfish street drug users who have chosen too do this too them selves and most have no intentions of wanting help you can not help those who do not want help too get off street drugs and even though we are struggling and many pain patients are dying we are disrespected and not treated like Americans As the deaths of the street user continues too rise in Ohio and other states we are collateral damage and are no longer innocent till proven guilty over bad laws that are not working and still continuing too be forced on disabled pain managed and our doctors please hold on and don’t give up in the hope that at the federal levels we will have some smart legislators realize this in the next administration too be elected in 2020 that this ibad policy too hold the pain managed accountable for others wrong doings and that what is happening is not working I pray every day for this non doctor law. Breaking ignorant legislators they will also suffer on judgement day for being accomplices for the causing death too innocent disabled and pain paitients with their bad laws and wasting our money making us pay medical bills triple the amount of the non pain managed I believe they will have chronic pain put upon them for their bad judgment so they may gain compassion and understanding God help us all!

Lance

This story outrages me! The doctor is wrong, and if he took the time to read the “guidelines “, I know I have, this is definitely an acceptable case for opioid pain relief. Do yourself a favor and tell that doctor to go to hell. If he’s not going to treat all of you, then he’s not going to profit from you any longer. How could he even look you in the face again? Yes there are guidelines put out by the CDC that I disagree with, but nowhere does it state that opioids are illegal. The doctors have to use common sense. I think many are using the guidelines as an excuse to denying medications and blaming it on the government.

Andie

What about trying a Spinal Cord Stimulator? I too suffer from Chronic Pancreatitis, due to a genetic defect. My pain Dr., suggested it after reading an article about the trials held in Korea. All 5 patients doing the trial period, found significant relief, combined with a mild dose of Opioids. I’ve been on the trial period for 7 days, and my pain level has gone down to about 50%, compared to living with the pain for over 36 years. I’ve had this condition since I was 19 years young. Do the research on SCS’s for pancreatitis. I’ve made up my mind that I’m going to get it placed permanently, and not be suffering any more. Hope that this helps you

Becky Moore

They are now cutting pain meds from cancer patients. My friend committed suicide because he could not get enough pain relief. They had him on Tylenol 3. And limited amounts. WTH!?!?!? I have multiple myeloma. A very painful cancer. My doctors are trying but are scared to lose their license to practice medicine. Cancer patients are supposed to be exempt! Well I wish the insurance companies, hospitals, clinics and pharmacies would read that note!! Even pharmacies seem to be running out of opiates. Or they don’t want to contribute to a terminal pain patient addiction. Hello anyone there in any of those super smart and med school brains? TERMINAL! Look up the definition! God help us!

Stacey Fields

The state of medicine today is disgusting when it comes to treating people in pain. I have had chronic pancreatitis for 15 years and it is EXTREMELY painful. The doctor is failing you and possibly putting you in danger by not treating you properly. The problem is they are all doing it at the blessing of our government. I have never seen medical professionals treat people so disrespectfully and it has ruined ANY trust or respect I had in them. People are advocating on social media but no attorney or agency is interested in helping us. Call your senators and tell them they are harming all of us with their knee-jerk reaction to an issue that has been blown up in the media and blamed on prescribed medications instead of the heroin and illicit fentanyl that is the problem. This is an EVERY Person problem EVERYONE will NEED pain care at some point in life and EVERYONE should be very concerned with politicians sticking their noses in our doctors’ offices. Everyone but the REAL professionals who have treated us is deciding our treatment or should I say mistreatment! Please see a pancreatic specialist, Dr Lehman at I.U. would be great but there are many good ones at I.U. Med Center

susan

any chance of finding an article about pain meds and multiple sclerosis? Thank you. Susan. I was dxed in 1993. I am disabled but ambulatory. On ssdi.

Jill

David, I live in Mentor and obviously you are not aware that the Clinic established a policy many months ago, maybe a year that prohibits any CCF Dr. from prescribing opioids for any reason. Euclid CCF was the wrong place to go for pain management!! The chronic pain foundation they are pushing is a program offering alternate therapies, such as CBT, massage, diet, etc. If you email me at mccoyjill2004@yahoo.com I can pass on the name of a Dr. in Willoughby who might help, although I’m unsure about treatment in your case and your insurance situation, but might be worth a call.

I had heard a while back that medicinal marijuana would be legal in your state. I know that others have had success with it. Just a suggestion, maybe you could look into it. As for the last part of your letter I am absolutely outraged that we in the chronic pain community are suffering because of their rules and regulations. I suffer daily. I do get some opioids but my quality of life year by year gets worse with know help. I’m in a state where medical marijuana isn’t legal so one week out of the month I smoke and the relief I get is unbelievably better. The other 3 weeks I am stuck using opioids because my urine needs to be clean or I will get none. It doesn’t seem right or fair. I’ve contemplated suicide, but always in the end I cannot because it wouldn’t be fair to my daughter. I am so tired of being in pain.

Leslie Berndt

Have they discovered the cause? My husband had it for over a year, and in ICU for a month where he almost coded and lost 40 pounds in a month due to not being able to eat nothing. He had a duct issue and a small cyst. He was on enzymes for months and a few procedures to try and help. But they did give him tramadol and strait Percocet, no Tylenol, for pain. This was before The whole opioid hysteria started.
They did the Whipple proceedure to finally stop the pain. It worked.

Sheryl Rogers

Ive had chronic pancreatitis for 3+ yrs now n see a person mngnt dr a anesthesiologist who writes me morphine n i love in Fla! Sooooooo sorry u are dealing with an a lack of common sense from r docs.

Sharon C.

I am not a doctor, but I am familiar with pancreatitis. The next time you have an attack of acute pancreatitis, go to a “county hospital.” They cannot turn you away because you may not have insurance. Your bloodwork (liver enzymes) will determine the severity of pancreatitis. In an acute case, you should not take anything, no food, no meds, by mouth. Everything is given via IV. That is the only way to totally rest your imflamed pancreas.

Your goal should be a referral to a place that sees only pancreas patients. Indiana University in Indianapolis has one. You live in Euclid, Ohio? How about Cleveland Clinic?

It’s beyond understanding, even barbaric, for a person with acute pancreatitis to be discharged from an emergency room. You should not leave any medical facility or office without papers showing your diagnosis, blood work results, and treatment plan, which should show meds given in the ER and discharge prescriptions, if any.

I wish you the best of luck and hope you can find quality treatment soon.

Nancy Wilson

I am so sorry for your pain. What is happening to pain patients is unexplainable. Our blood is on all who refuse to give us proper care. They seem to think that they will escape judgement. Illness or injury can happen to anyone at anytime. Stay strong, God hears your prayers.

William Dorn

Why wont the government admit the opioid guidelines where a mistake and get rid of them before more innocent chronic pain patients suffer and die. Our veterans are also being denied pain medicines and have been taking their own lives in record numbers. What is going on in this country where are rights are being taken away. I thought this was a free country but it is looking less like it everyday.

Hayden

Very sorry to find yet another person, patient, needing medically available, effective treatment for the management of pain. With some 9 to 11 million patients, (as per CDC now) that need opioid medication in an effective, tailored dosage as the last effective pain medication for many illnesses, injuries, and medical “mishaps”, their, the 2016 CDC “guideline” has and continues to cause treatable pain for acute health issues as well as documented “for life” pain management conditions to be simply dismissed. DEA has misinterpreted the guideline OR it is a well manufactured “opioid crisis” targeting lifetime pain management patients with many different pain generating health conditions through very real intimidation, to save money. ALL opioid medication prescribing professionals that dare exceed the CDC guideline of a maximum dosage of morphine equivalent of any scheduled, very much controlled substances face, without a doubt, extreme penalties,loss of enterprise, including license surrender to practice medicine. Even doctors and specialists in pain management are bound…..to the 2016 CDC guideline or face extinction to practice medicine. It seems a recommendation, or better known as the CDC “guideline” is more effective in harming the lives of their stated 9 to 11 million patients, than reducing overdose from SUBSTANCE abuse in America. The rate of overdose has risen every year since the guideline was forced upon our physicians yet, CDC has been extremely hesitant to correct or even attempt to correct this fact. With patients all across the nation reporting their medication to have been involuntarily reduced to the guideline recommendation of 90 milligrams of morphine equivalent per day for well documented patients of years, decades who have intractable pain, the narrative continues to worsen .Bureaucracy and money will always get it’s say….first. Well wishes to to you Mr. Lord.

ROGER JACKSON

HELP!!!!!!

ROGER JACKSON

WE NEED A BIG FOOT TO ADVOCATE,STRIKE BACK, FOR US THAT ARE BEING FORCED TAPERED. WHEN ARE THE COWARDLY DOCTORS GOING TO HELP US. FEELING ALL THE PAIN ,FROM YEARS OF ACCIDENTS AND ILLNESSESS, IS NOT RIGHT . WHEN IS THIS CYCLE GOING TO CYCLE BACK TO THE PATIENT’S RIGHTS?
A CRY FOR HELP HAS TO BE COMING.

F.S.T.

This essay leaves me in tears. It underscores the plight chronic pain patients find ourselves in daily! If only costs were considered, it is absurd and ridiculous that patients “go to the ER” for help (which, surely the doctor has somehow heard ERs aren’t dispensing pain medication either! Costs to this patient, and millions of others seeking honest help to alleviate pain, are into the tens and hundreds of thousands of dollars, when the problem would be solved by a seven-dollar bottle of pain-relieving medication.

My question to the insurance companies: Why are you so silent in this assault on pain patients? You’ve been hit with huge bills to pay because of the refusal of pcp’s to adequately treat us. Where is YOUR outrage as you’ve poo-pooed us consumers to keep costs down by not filing claims?

That’s another elephant in the room no one’s talking about.
Insurance companies, you have the clout. Why aren’t you speaking up for those you cover, as you sit idly by while charges have compounded, when one measly prescription could take care of the patient and reduce/eliminate these multiplied charges?

CLaws

It was recently discovered that I have a congenital issue called pancreatic divisum and possibly chronic pancreatitis but my amylase and lipase enzymes are never elevated. I have read that that pancreatitis doesn’t always present with those two enzymes elevated and was wondering about yours? If you are clearly presenting with the typical symptoms of pancreatitis I cannot imagine you not receiving properly managed pain. When I have a pancreatic pain flare it’s pain that almost makes me pass out. It’s crazy pain. Any one capable of relieving this type of pain and refusing is a torturer and a monster IMHO.