An Unlikely Advocate for Pain Medication Access: A Chronic Pancreatitis Patient Speaks Out

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Chronic pancreatitis and pain killers
I never thought I would be an advocate for pain medication access. I have been clean from alcohol and non-opiate drug abuse for 17 years. I am an active member of a 12 step fellowship. I sponsor women and have a sponsor. I regularly attend meetings. For most of my recovery I was anti-pain medication. I still believe opioid pain medication should be avoided in most situations. I also advocated against pain medication—so that it would not get into the hands of teens.

From Sphincter of Oddi Dysfunction to Chronic Pancreatitis

I dealt with sphincter of oddi dysfunction pain for over 13 years, never taking opioid pain medication for this condition. I also have painful neuropathy for which non-narcotic medication did not help. I chose to treat with alternative therapies, which sometimes helped. This year I was diagnosed with chronic pancreatitis. Chronic pancreatitis is well documented in the medical literature as being “excruciating”, “severe”, and even “miserable”. Some medical articles have documented chronic pancreatitis pain as worse than pancreatic cancer pain. In some states I qualify for palliative care, one step down from hospice care. There are no evidence-based treatments for chronic pancreatitis pain other than opioid pain medication and total pancreatectomy (pancreas removal).

The horrible unrelenting pain flares drove my family and me to seek pain management. After all, I wanted to die. I am not just saying I wanted to die. I mean I really wanted to die. The pain was on par with labor pain. Imagine trying to function every day in labor—but have no break in between contractions? I learned to function with the daily pain but when the flares came on I thought I would die and if I didn’t I surely needed to figure out how to end my life and suffering. My primary care doctor and a gastroenterologist I later fired tried me on the usual first line treatments for pain. NSAIDs gave me microscopic colitis. Tylenol was useless. Non-cholinergics like amitriptyline caused severe itching in places I’d rather not mention. Nerve medications like gabapentin and Lyrica and anything affecting GABA caused flu-like symptoms and exacerbated my pancreatic symptoms (pancreatitis is a side effect). I tried hypnotherapy, acupuncture, reiki, yoga, meditation, magnesium, and any natural remedy I came across.

Chronic Pancreatitis
The radiating pain of chronic pancreatitis.

Eventually pain of this level wears on the body and mind no matter how hard you are working at treating it. Finally, after heavy consult with my Higher Power, sponsor, mom, husband, and a close recovery friend, it was decided I needed to actively seek stronger more effective pain relief. My primary care and pretty much all primary care doctors in my area have a policy of not prescribing opioid pain medication. Specialists, unless you have cancer, don’t either. No pain management doctor in our area who takes insurance will prescribe pain meds anymore—they only offer injections, procedures, and non-narcotic medications. At one point I relented out of desperation to have a celiac plexus nerve block. The pain doctor kept insisting it was the only thing that worked for pancreatic pain. My primary care totally bought into it too, mostly I felt because he didn’t have to write a prescription. These doctors had no clue how tapped in I was with research. Nowhere was it documented to be a proven treatment for chronic pancreatitis. Regardless, because I was desperate for pain relief and told this was my only hope, I paid a hefty copay, spent half the day in the hospital, was sedated and had a needle stuck through my abdomen. It did nothing. No relief.

A Near Stroke from Severe Pancreatitis Pain

At one point my body just could not handle the pain anymore. I had gone so long suffering that it said, “enough.” One evening a few months ago the pain intensified to a degree my blood pressure doubled (I have one of those little machines) and my right side went numb. I was about to have a stroke! From pain! Luckily I was saved with emergency pain medication. At this point my gastroenterologist was infuriated my primary or any pain doctor would not try to manage this. He ended up prescribing a low but effective dose of an opioid for the flares so I wouldn’t stroke out and die. Unfortunately, the hospital he worked at told him I needed to find pain management. I finally found a doctor quite a drive away who I have to pay out of pocket because apparently insurance companies think they are the DEA now and don’t want to approve insurance for pain doctors who prescribe opioids. For now, I have a safety net. I do not enjoy pain medication and only take when I absolutely need to. My recovering addict friends don’t get it and quite frankly they don’t have to. Try walking in my shoes, having chronic pain and illness for four years straight. Trust me, the only pill you’ll desire is one that makes you feel normal, not one with side effects.

Guidelines on Pain Management Ignore Chronic Pain

When the opportunity arose to comment on the draft Center for Disease Control’s “CDC Guideline for Prescribing Opioids for Chronic Pain”, I looked forward to reawakening my grant reviewer skills to objectively identify the strengths and weaknesses of the document with the hope it would help pain patients. Unfortunately, I found it near impossible and beyond frustrating to review this document in an objective manner. The guideline is not organized like a typical guideline or tool kit. It is nothing more than a literature review of the harms and risks of opioids times 100. It is a warning for all doctors to not treat pain! Reading this document left me scared—really scared. It left me wondering what happened to the United States and to the rights of chronic pain patients? How could this be? No consumer groups or chronic pain patients were included in their peer review or “experts” process.

Yes, there are harms and risks with opioids, but a document meant to help primary care doctors in prescribing should be just that. It is biased in that it quotes very little about the realities of opioid treatment—that it is sometimes the only treatment modality left for some people. Even the DEA and 21 Health Organizations wrote, “Promoting pain relief and preventing abuse of pain medications: A critical balancing act” which states “Effective pain management is an integral and important aspect of quality medical care, and pain should be treated aggressively… Preventing drug abuse is an important societal goal, but it should not hinder patients’ ability to receive the care they need and deserve”.

The guideline talks about other medications and treatments yet fails miserably at discussing the lengthy side effects and risks of these treatments. They are conveniently omitted. The statistics in the Background section do not delineate criminal activity from actual chronic pain patients in a pain management type setting nor does it flesh out overdoses or drug use that involved polydrug use of illicit drugs or alcohol. Instead of a literature review detailing harms and risks doctors need supportive information. I would hope that a doctor knows the risks of any medication they are prescribing.

What Pain Management Guidelines Should Address

The guideline should explain that primary care doctors may be the only opioid prescriber in a patient’s area as most pain management doctors no longer manage chronic pain with opioids and specialists refuse to prescribe. Primary care doctors have by default become pain management doctors. As such, pain patients should not be punished for this trend. Also, doctors need to learn how to educate patients on the difference between physical dependence, tolerance, and addiction/misuse of opioid medications. Just because you are on pain medication does not mean you are a drug user or an active addict.

Patients need to be taught basic opioid safety—keeping the opioids locked away and out of teenagers’ hands. Many patients are naïve to think their teens would never consider experimenting with their meds or visitors won’t snoop through a medicine cabinet. Providing real-world information will prevent unnecessary overdoses NOT limiting chronic pain patients their pain medication.

The CDC is clearly not the appropriate agency to spearhead opioid prescribing guidelines. They are good at authoring literature reviews on ebola and trying to find cures for diseases. They are NOT equipped to publish guidelines of this manner. This is not an epidemic as the media is reporting. Overdoses and drug abuse are rare in the chronic pain patient population. There is no evidence chronic pain patients become heroin addicts. In fact, the only heroin addicts I’ve met who used to be chronic pain patients were those who were cut off from their doctors with no treatment plan. Proper pain management actually prevents illicit drug abuse. Hopefully the chronic pain patient’s story will be heard. So far, the government and media have turned a blind eye to them.

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7 Comments

  1. Brook, I couldn’t have said it any better. I’m getting injections, blocks and am on a dose that leaves me up every other night suffering in agony. I was told by my pain management doctor that he needs me to cut back on my dose again. I am so scared as to how I will cope, and how this is going to affect my ability to raise funding for my islet transplant hopes. I even consulted with transplant surgeon to please just take my pancreas from me. He said no because I am still a good canidate. We lost ourlocal pancreas clinic after Obama care took affect. No sick ones allowed. I wish they understood the severity. I researched and found a study that suggested the narcotic recommendations for CP were not sufficient. It said the dose should be increased for those suffering sith CP. I am not an addict, nor an alcoholic. My CP came on from chemo meds given to me for RA. I appreciate your letter, and advocacy in this matter. I have an online support group, and am friends sith many who are suffering the same fate. So far this year a seven year old boy died in an Er from a doctor who sent him away four times that day. They just let him die. Then came the lawyers and we we were told it wouldn’t make news because of litigations. Then a member of another group decided to end his life live via Skype while other members were trying to save him. That left a stain in my mind. I think he thought it might bring some much needed awareness. And now after CDC guidelines and so many losing access to treatment or pain relief. It’s suicide or some are just dying from complications, and one lady was totally misdiagnosed and had pancreatic cancer no CP. I became a support for her but I felt do lost as to how to keep my hopes up and quiet my own internal fears of cancer coming before trandplant. Now that the new studies prove that we will eventually have it progress to pancreatic cancer. It still is a disease full of stigma and judgements, and not well understood. I’m not sure how many lives it’s gonna take for the powers that be to give some mercy and trust to us who are plagued by an organ dying inside us? 🙁

    1. I am so sorry to read your doctors want you to keep reducing your medication. Pancreatic pain is awful and tortuous. Unfortunately everything you said is true. CP patients are treated like drug seekers and no compassion or sense of urgency. Hopefully through our patient voices and advocacy this will change. I wish you the best.

  2. Thank you for this article and great insight and information. Although I do not share your medical issues, I understand your pain and frustration. I have two very rare progressive “syndromes”. I am also a recovering alcoholic who had to make the same decision to take pain medication. They are medication not drugs. There is a big difference. I drank as a way to self medicate because I was desperate for pain relief and acceptance. My family who has never accepted me has accused me of seeking drugs. They have never even asked me about my conditions or offered to help me in any way. They don’t get the right to make such accusations. They do not know or care to know that I have NEVER abused or misused my pain MEDICATION. I need this medication to much to ever risk losing it. It took my almost successful suicide attempt before any doctor ever believed that the pain was unbearable and never ending. That’s the problem with having conditions so rare that most doctors have never even heard of them before. I’ve had many doctors call me a liar when I tried to explain my conditions. It has been almost 30 yrs since I was diagnosed correctly and yet nothing has changed. If doctors don’t even know or have a clue about my syndromes and all the associated problems, how can some bureaucrat make informed decisions about whether or not I and others like me need these kinds of medications? I already have enough problems with Medicare denying things I need because my conditions aren’t included on their lists of acceptable diagnosis needed for their approval. It’s just ludicrous that some pencil pushers with unacceptable opinions get to write policies, make unfair uneducated assumptions, and deny coverage for people and conditions they know nothing about. They need to quit listening to the uninformed public hype. Maybe they could just sit down and really listen to those of us who suffer the pain. Listen to the degradation and pain we go through every day of our lives. Listen to those who are still waiting desperately for someone to acknowledge their pain and help them. Don’t make our lives any harder than it already is. Don’t make us fight for our lives. Don’t make us use the little strength and energy we have left on fighting an unfair system. We need to use that energy on surviving not fighting. I should apologize for this being such a long message, but I won’t. I am fighting for my life and the lives of people like me who live with unbearable pain. I will never apoligize for that.

  3. I have had “autoimmune pancreatitis ” since the late 1990s. Never drank, never did any drugs. The pancreatitis started after having a TAH. I do think it has something to do with hormonal imbalance. I also have a blood clotting disorder and could not take hormone replacement. The first three years of this disease I was given Demerol IV, a drug they don’t even use any more because it was in safe. For 10 yrs went to pain clinics. All they did is.write u a script and go to the next patient. When I decided I had enough of all the prejudices of health care workers for people who really need it, I called the pain clinic and said ” I would like to be weaned down to the lowest to level possible. They replied “we do not do detox”. I was appalled. I thought the whole goal of pain management is to have the patient who has a very well documented painful disease, I knew I could not function without any medicine but I thought the whole idea of a pain clinic was to help the patient with pain to be able to be on the most optimum pain medicine to be as independent as possible and be able to function in their active activities of daily living. So now I still continue to be hospitalized monthly for acute flare of pancreatitis, pain doctors now only will do nerve blocks, which I am not a canidate for because of my history of blood clots. NSAIDS I can not take because I am on blood thinners, so for the past 22 yrs. the only thing that has been able to control my chronic pancreatitis is opiates. I set goals with my doctor, both short term and long term. I have built up a tolerance, but I do not get a “high” feeling. I get the feeling of thank God I can get out of bed, get a shower and do my activities of daily living without lying in a fetal position in pain. In bed, which would eventually end up in the hospital. I am appalled by the judgement of health care workers that go along with patients that use chronic opiate therapy for pain. I have told many of nurses, doctors, ect. “Until you have walked a mile in my shoes, than u can judge.” So there are so many cases with patients like me, that are not black and white. Their are many gray areas and many patients like myself that need opiate therapy in order to function. The FDA needs to look at patient is ta on a case by case basis. You either fit in the black and white catagory or you need to look at the thousands of people in the gray area in which these drugs just can’t be stopped. It needs to be documented what medications that patient has tried or in my case the many non opiates that can’t be taken because but are not able to take because of allergies or because of their past medical history. If you take away the doctors right to adaquately treat their patients and the includes being able to prescribe opiates than I believe their will be a rise of those patients who need opiate pain meds trying to obtain them illegally. I think their will be an even higher rate of crime, as well as overdoses. Thank you for allowing me to Exspress my opinion. Tracy Finke

    1. you are wright been there my story is almost the same now its turned to cancer because of them yes them doctors hospitals and staff they thouhht i was a junky even after being in the hospital 11 times in 2 years did they think i was liking that, some times weeks at a time. so i gave up on them and suffered with the meds they gave me some times wishing i was dead now it s over well bed to couch was not any fun so good luck and god bless.i do not care about me but my family payed and still are.now they get it the hospital and staff to late for sorrys wait it will happen to them not my wishes but how it works god bless…

  4. I have porphyria, acute intermittent. It’s a somewhat rare blood disorder, so rare that, if hospitalized somewhere where my Hematologist does not have privileges, it is almost always misdiagnosed. Pancreatitis is usually one of the first guesses, which leads me to believe that our pain is similar. As I’m sure you know, “A Couple of Asprin” isn’t even touching this pain, and while I too hate the ‘Fog’ of any pain meds, this pain is enough to drive you insane, literally. Thanks, in part, to the drug seekers and dealers, and in part to the hard-hearted “healers” in the Emergency Room, and even the Pain Doctors we are referred to by our other physicians who are too lazy to research their new cases before they see the patient, WE have to suffer. I’ll never know what I did, or what ANY of us have done to live like this…..

  5. Brooke, your article is so educating I wish everyone could read it. I will share and share!
    Thank you for putting your story to helpful words. I am saddened by what you have gone through and go through now.
    I hope people will make comments on the CDC guidelines before it cuts off Jan. 13, and cite experiences like you have here. We need people like you to help us through these painful and frustrating journeys.

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