My Story: A Chronic Pancreatitis Patient Knows What It Means to Hurt and Recover

My Story: A Chronic Pancreatitis Patient Knows What It Means to Hurt and Recover

By Brooke Lee Keefer

Brooke Lee Keefer

Brooke Lee Keefer

Nine months ago I began having severe pancreatic pain attacks.  I knew it was my pancreas because I had acute pancreatitis in 2012, triggered by an invasive endoscopic procedure.  You don’t forget pancreatic pain.  It is awful.  The pain was searing, burning and stabbing.  It was like a bunch of burning hot pokers were stabbing me through the front of my sternum out through my back with the pain radiating up into my shoulders.  I had been in labor three times and this pain was on par with labor, except with labor you get a break in between contractions.  I did not get a break.  I received a temporary diagnosis of chronic pancreatitis, which turned into a permanent diagnosis a few months ago when an endoscopic ultrasound showed damage in my pancreas and duct from scarring and calcifications.  Though drinking alcohol is a common trigger for pancreatitis, I haven’t had a drink in seventeen years.  My doctors don’t know the exact cause but I have my theories, one of which is the gabapentin and Lyrica I was on for my neuropathy.

Chronic pancreatitis is well documented in the medical literature as “excruciating”, “severe”, and even “miserable”.  Some medical articles have documented chronic pancreatitis pain as worse than pancreatic cancer pain.  Technically, I qualify for palliative care, one step down from hospice care, but of course convincing the medical community of that is a whole other story.  There are no evidence-based treatments for chronic pancreatitis pain other than opioid pain medication and surgeries like a total pancreatectomy (pancreas removal).  Ironically, researchers and popular websites are now saying opioids are not a proven treatment for pancreatic pain, though earlier studies undoubtedly proved it alleviated the intensity of the pain and is proven to help pancreatic cancer pain.  The problem is there are few studies and no long term studies.

I was no stranger to pain prior to these attacks.  I suffered from Sphincter of Oddi Dysfunction for over 13 years, misdiagnosed that entire time with IBS.  Though the pain could be severe, it was the typed of pain I could manage with meditation, diet, yoga, and deep breathing.  In 2012 I developed very painful peripheral neuropathy thanks to an adverse reaction to Levaquin, a fluoroquinolone antibiotic known to cause permanent neuropathy.  The pain was dreadful but I managed it with nerve pain medications, lidocaine patches, tiger balm, Epsom salt baths, and mindfulness techniques.

Since I had become very resourceful with pain management techniques in the past, I went right to task employing natural remedies like hypnotherapy, acupuncture, reiki, yoga, meditation, magnesium, and antioxidants.  My gastroenterologist increased my prescription pancreatic enzymes and I altered my diet.  Sadly, the pain turned out to be an impenetrable beast.  Nothing I tried worked which was frightening and frustrating.  As the weeks went on, the horrible unrelenting pain flares drove my family and me to seek pain management.  The pain was so intense, severe and nonstop that I considered death.  I am not just saying I wanted to die. I mean I really wanted to die.

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 and barely touched the pain.  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 like a benzodiazepine caused flu-like symptoms and exacerbated my pancreatic symptoms (pancreatitis is a side effect).

Eventually pain of this level wears on the body and mind no matter how hard you are working to treat it.  It got to the point I needed something stronger in the form of pain management.  I was relatively against opioid pain medication most of my life.  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.  I did not want to go this route but those closest to me saw how dangerous this pain was to me physically, mentally, and spiritually.  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.  Someone told me it’s New York’s insurance companies dictating this.  Others tell me it’s our strict DEA database inciting fear in all doctors.  I got so desperate for pain relief that I relented 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.  More like 50/50.  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.

Six months after the attacks began, my body clearly could not handle the pain anymore.  I had gone so long suffering that it said, “enough.”  One evening, 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!  I was moaning on the living room floor in pain reminiscent of labor, trying to control it with Lamaze-type deep breathing.  Luckily I was saved with emergency pain medication.  At this point my gastroenterologist felt he had to be the one to intervene and prescribed pain medication.  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 doesn’t necessarily approve of their GI doctors offering pain management.  There was nowhere for me to go.  It took two months but I finally found a doctor to take over the prescribing.  He is quite a drive away and I have to pay out of pocket because of the insurance companies.  He said it is absolutely ridiculous someone on such a low dose as me isn’t getting the prescription from their primary care doctor.  For now, I have a safety net.  I do not enjoy pain medication and only take when I absolutely need to.  I hate living in fear this doctor will close shop or stop seeing me, which is becoming the reality for most chronic pain patients.  I honestly won’t survive that tortuous pain again.

The good news is the small amount of pain medication has allowed me to benefit from things like acupuncture, mediation, and yoga.  Before, the pain was so acute that it was impossible to reap the benefits of anything positive.  With less stress on my body, the supplements are helping and I feel I could actually put this dreaded disease into a remission someday and not need any medication.  There was no way my pancreas could calm down and heal when I was fearful and stressed from severe acute pain.  My mental health took a severe toll as well.  I had to enter therapy for the trauma the medical profession and the pain put me through this past year.  Fortunately, the hypnotherapist I saw in the beginning for the pain was a social worker who also did trauma work.  He has seen me every step of the way and is helping me recover.  The therapy, medication and employing the natural holistic remedies has elevated me to a quality of life where I can enjoy my family, be a mom, a daughter, friend, and now help to advocate for other pain patients.  No one in this country deserves to suffer from chronic pain when there are treatments out there.  Never Ever Give Up is my motto.

Editor’s Note: Brooke Lee Keefer is a mom to three sons ages 28, 19, and 4 and has a 2-year-old granddaughter. Brooke has a Bachelor of Science degree in Mathematics from the State University of New York at Albany. For over 15 years she worked as a not-for-profit director, lobbyist, advocate, and a grants writer, manager, and reviewer in the field of children’s mental health. Brooke suffers from several painful conditions—sphincter of oddi dysfunction (a defect in the pancreatic/biliary valves), chronic pancreatitis, and fluoroquinolone toxicity syndrome (long term adverse reaction of the nervous system to Levaquin). Though these have disabled her, she writes health articles, advocates for patient rights, and runs the Sphincter of Oddi Dysfunction Awareness and Education Network website, www.sodae.org.

 

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Authored by: Brooke Lee Keefer

There are 15 comments for this article
  1. Caitlin at 1:59 am

    I was diagnosed with pancreas divisum and sphincter of oddi dysfunction when I was 15. I’ve had 6 pancreatic stent procedures, a Whipple procedure, a Puestow procedure, and a partial pancreatectomy. The partial pancreatectomy was supposed to be a complete removal, but the doctor was able to save part of my pancreas and only remove the necrotic tissue. This was good as it kept me from becoming a brittle diabetic at the age of 21. I’m now 29 and still suffer from chronic pancreatitis. The biggest wall I find in my care is also a pain medication issue. Due to my age everyone looks at me as a drug seeker. Nevermind my comorbidity of Cystic Fibrosis. I also have difficulties explaining to hospital doctors why my pancreatic enzymes don’t elevate anymore during attacks. Which is basically because what is left of my pancreas is too small to produce the levels they look for, in fact my lipase is always low. Thank you for writing this article and for standing up for all of us.

  2. Stacey Fields at 1:42 pm

    Thank you Brooke, if we ALL work together hopefully we can change this exhausting dance we do with the Dr’s. I am also hopeful that some of the Dr’s who know (like the ones posting here) will start standing with us. You are right acute and chronic are equally painful and both should be treated the right way and with respect. My daughter is now showing signs of pancreatitis and I will NEVER stop fighting for all of us. Kuddos to you for your story honey, keep telling it! I spend many nights on the phone with pancreatitis sufferers just needing someone to listen. I am also working on some things that I think will help others to wake up to this disease! One foot in front of the other my dear!

  3. Brooke at 12:07 pm

    Pamela,

    I was fortunate to get disability straight away 3 years ago but I was in the hospital more than out for an entire year and on a feeding tube. This past August Social Security sent me a letter saying I was ok to go back to work and they were cutting me off. I saw “their” doctor for all of 5 minutes. They cited only a few of my medical records and left out many I feel purposefully. I appealed and I appealed hard. I spend half of the month in bed. There is no way I can work. I found a disability advocate who educated me on what to do. It was a lot of work but last week I got a letter saying they changed their minds and I am actually disabled. The most important thing is to get at least one doctor to complete a capabilities form. SSD usually sends their own but this advocate and most lawyers have a template. I can’t trust my doctors to get it exactly right and I know they are busy, so I schedule an office visit to complete the form together. I am not happy I have to pay a copay but at least it gets done and the way it is supposed to. My neurologist is the one who did it this time. Other times it’s my primary care doctor. Once that is done, I had to call several times to make sure they sent the form to SSD and made sure they sent me the finished document (the doctor couldn’t finish it all while I was there). THAT is what SSD wants to see. They will be selective with medical records so you can’t rely on just records. I also sent them NIH research studies about my condition and how painful and disabling it is. These reviewers can’t possibly understand every condition and neither can their doctors so we have to educate them. I am sorry you keep getting denied. I really hope that turns around for you.

  4. Pamela Polhamus at 7:11 pm

    I so know your pain and the torture of this life with this disease. I too have chronic pancreatitis. I have had it for 12 years. I am one of the lucky one’s who found a pain doctor that is kind and caring. For years before i found this angel, i was in and out of the hospital at least 2 time’s a year with acute pancreatitis, it was always a roll of the dice at what kind of medical treatment i would receive. I once had a dr tell me no way would she give me any pain medicine because i had a chronic illness, i was rolling in pain, crying and blood pressure was 170/100. I was so scared and in so much pain that day that i came very close to taking my life. I then went to a bigger city hospital where i was treated like a human being and they gave me morphine right away. You just never know when you walk in that hospital if you will get the help you so badly need. I have lost most of my family due to this disease, they either don’t want to stay and help or feel i am to much of a burden seeing how i am not making any money to help with supporting myself. I have tried to get disability for 4 years now, have been turned down every time. The last time which was aug, they said even though i am in great pain and have lost most of my weight and muscles i was still able to talk so i could find a job that would suit my needs. Have these people lost there minds. Who would hire a manager that is on high pain meds and is not responsible for being able to make it to work everyday due to pain. I have changed so much, i am no longer that nice carefree person i used to be. I am now just a shell of a human being in tortures pain daily. Yes, i do pray daily to beg my God to please take me home for living here on earth now is as close to hell as it gets. i am now alone to live with my pain.

  5. Cynthia at 6:36 pm

    OMG, Brooke, your story is so so powerful. I sure hope the CDC panel gets to read it, and I hope they read all the others in this thread and other threads here. WHat the hell is going on in this country with this pain med issue? I am so glad to see the doctors speaking up. I have horrible back pain and neuropathy in legs and feet. I don’t think I would have the ability to cope without opiate pain medication. I live in a state where this nightmare hasn’t happened yet, but it surely could at any time, There must be more we can do to stop this assault on suffering people. Maybe the doctors can give us pointers? This just can’t go on, it can’t. It’s so inhumane and wrong.

  6. Brooke at 4:52 pm

    Dr. Goldwin, I am very grateful you are on “our side” about this nonsense. Why on earth aren’t more doctors banding together and having the AMA and other associations help them to educate policymakers? Policymakers will believe doctors probably before they believe us pain patients. I ask only because this has baffled me for years. All of the pain doctors in Albany, NY area just relented to insurance companies, the databases, and any other big brother ploy without so much as a fight or lobby day. That is what really infuriated me. The one pain doctor, who by the way isn’t a trained pain doctor but a former family physician, who will prescribe my meds is a far drive north but travels down to Albany to lobby and advocate about pain patient rights. Unfortunately he is alone and our senators and assemblymen pretty much shut the door on him and told him they were upset he wasn’t donating to their campaigns. My primary and all the other primaries just say No to prescribing and that is that. They act like they don’t care–at all! How can we the pain patients rally doctors to lobby and advocate with us?

    Stacey, I am grateful for all you do. The stories I can’t stand reading are the CP patients who go to the hospital in acute pain and are denied opioid pain meds and then accused of being drug seekers. I am sorry but CP acute flares that don’t raise enzyme levels are just as painful as full blown acute pancreatitis pain yet they insist on no more than toradol which does nothing. The hospitals here in Albany are terrible for that. If you have normal enzymes they accuse you of exaggerating your pain. They are totally uneducated in CP and don’t want to learn or hear about it. I had one nurse in the ER tell me they wouldn’t give me pain meds because “it’s proven pain medication doesn’t work on abdominal pain”. It’s insanity. I haven’t gone to an ER in 2 years though I should’ve a dozen times and as such nearly died. They gave me PTSD.

    Kallie, glad you are getting treated well. I hate to hear how long you’ve had to deal with this dreadful disease but happy they take you seriously about your pain.

  7. Kallie at 1:28 pm

    My name’s Kallie, I’m 25 and I was diagnosed with chronic pancreatitis when I was 11. (after seven years of testing we found out that I have it due to a genetic mutation, how lucky am I! Lol) Doctors have been prescribing me opiates (I’ve had Demerol, Morphine, and now Deltoid all interveniously) whenever I am admitted to a hospital and it was consistently helpful. The only time it was a problem is the ONE time a new doctor did not monitor me correctly and i became addicted to the medication and went through withdrawals as they tapered down my medication. It was terrible, but now they watch my doses carefully, which they always should have done due to how highly addictive they are. (I want to point out that the addiction wasn’t my fault, I was 16 and I only asked for pain meds once my pain level was over a 7. I wasn’t aware of how much I was being given.)
    Maybe it is easier for me because my CP comes in waves and when I’m not hospitalized I can live a fairly normal life, but I hope things get easier for you soon. It’s not fair that things are so hard, this isn’t right!

  8. Stacey Fields at 12:51 pm

    Hello, I have had chronic pancreatitis for over 12 years now due to gallstones/gallbladder removal, herniated disc, ruptured discs and a lower lumbar fracture. I also run a support group for CP that has over 1300 members. I have heard many horror stories about patients not able to get Dr’s to write pain medicine for them. Chronic pancreatitis is so un-Godly painful it is unreal! I have had natural childbirth and would take that 10 times over. This pain is unrelenting and we need opioid medication in order to have any type of normalcy in our lives or even to get out of bed in many cases. Many of us have had the nerve blocks with no relief as well as some of the holistic things Brooke mentions to no avail. We are treated as drug seekers, liars and accused of being drinkers (I & others in group have never been a drinkers) or given token medication that would never touch this type of pain. This pain is visceral which is hard to control and I implore the medical community to stand up and fight with us, patients who are in dire need of pain control. We need this to happen before more pain patients take their lives as a result of not being able to handle this pain any longer. I personally have begged God not to wake me in the morning as you get so tired of fighting, I am mad and disillutioned with the folks who are supposed to help us. Now we are fighting back! This is inhumane treatment to say the least! I went to D.C. last year to lobby for research money and was told by a pharmaceutical rep there just isn’t enough of us sick with this to warrant spending ,money for any research on medications or treatments for chronic pancreatitis which was very disheartening. So bottom line no or very little research, no treatment options and no pain medicines, it is little wonder we are seeing pain patients take their own lives more and more!

  9. Jeremy Goidwin, MS, MD at 11:28 am

    As a past university pain management division chief who trained at several of the top institutions in the world, and as one who has been targeted by the so-called ‘authorities’ because of my support for patients like Brooke and others above, such unspeakable pain is domething which should not be allowed when we have the means to attenuate it. We cannot always eliminate it. But if the proper use of multiple modalities is employed, integrating different approaches creatively, then the opioid levels can be minimised although likely to remain quite high. But we need opioids to be available in order to help! And insurance snd government cannot have it both ways. They must fund education and use of collaborative or integrative medicine so that we can help.

    There is no justification for such patient abuse. None. And the problem of addiction—way overblown to justify many clinicians’ fear of inadequacy working with patients in persistent or severe, recurrent acute pain— needs to be addressed separately or in appropriate context where pain is also involved. It shocks, frustrates and saddens me greatly to be so highly trained and yet threatened by the authorities while watching millions of patients literally scream for help.

    Where did CARE go in the pursuit for CURE?

  10. Brooke at 11:10 am

    Alexandra, I am so sorry you are having to deal with an insurance debacle. That is crazy! I was on a feeding tube three years ago when my sphincter of oddi dysfunction was bad. I know how hard that is. Hang in there.

    Dr Oberg, It is nice to hear a doctor standing up for this crazy nonsense. I can tell you I know people with cancer who don’t even need the pain meds but are given an endless supply. I heard of one who sells them. Oncologists and other cancer doctors don’t conduct urine tests or do proper pain management and they don’t have to. Unreal. Then there is the person I know who gets pain meds and keeps them on the table around the clock for teens in the house to see and one day potentially take some either for them or friends. Cancer docs hand out these scripts like it’s a script for a cholesterol med. No safety tutorial (like “lock your meds up”), urine screening, addiction education, nothing! This is where the CDC’s injury prevention department needs to focus on–cancer patients.

  11. Alexandra at 9:33 am

    My name is Alexandra,
    I am a candidate for the TP/AIT surgery at Baylor in Dallas and will most likely not be able to have my surgery due to insurance not wanting to cover the auto islet cell portion of the surgery. So I am now home bound on a feeding tube 24/7 and pain meds. I don’t only have chronic pancreatitis, Addison’s disease, gerds, gastroperisis, asthma, anemia, a herniated disk, magnesium deficiency, calcium deficiency, and vitamin D deficiency. We got told I have the bone density of a 60 year old.

  12. Richard Oberg M.D. at 9:28 am

    This story and the cop out by large swaths of health care systems is stated accurately and awaits anyone in Brooke’s horrible situation. The notion of cancer vs. non-cancer pain is nonsense for any number of reasons and is a fear-driven outdated notion that people with ‘cancer’ (as a pathologist unless specified is a meaningless term) all have markedly limited lifespans is overly simplistic poppycock. Oncology articles suggest new successes in treatment for breast cancer and others can consider many of them to be chronic diseases – how does that fit this notion? They also get things like Brooke has due to longer lifespans and other treatments (which rheumatology patients routinely get now also) along with other comorbidities not related to their ‘cancer’ which are much more painful – are they denied pain medication for those? We have a very expensive health care system with high paid professionals that shouldn’t put patients at blame (and suffer needlessly scrambling for relief) because of squabbles between them and federal oversight by the DEA, CDC, or whomever but that’s what we have.

  13. Brooke at 9:20 am

    Heidi,

    I encourage you and everyone with access issues to contact their elected officials. Google your state legislator, senator, and national senate and congressmen representatives. They need to know that insurance companies are trying to play doctor. They are NOT your doctor and should not be dictating what dose you are on. You may be targeted because you are on a name brand drug which is expensive. Contact the pharmaceutical company as well to see if they have any advocacy tips. Kadian is made by Actavis Elizabeth LLC and is marketed and distributed by Alpharma Pharmaceuticals LLC. I had to do some digging, but I think this is the phone number for Alpharma: 732-465-3632. Or, ask your pain doctor for the Kadian drug rep’s contact info. I know the struggle too well. I am a grandma too and if it weren’t for medication some days I wouldn’t be able to enjoy my granddaughter and kids. Hang in there!

  14. Heidi Burke at 6:57 am

    I to am a chronic pain sufferer since 1998. It was an on the job injury. I am now being told by Workmans comp that my opioid use Must be weaned down to only 100 mg a day. I take Kadian 100 mg twice a day and MSIR 30 mg 3 times a day for break through pain. I also have a spinal cord stim. I was diagnosed with CRPS (RSD). I don’t know what to do this has been going on for months with them approving one Med one month then the next not approving that Med but approving the other. My pain mange meant dr. has been fighting for me but no use. A comp Atty won’t take my case because they said they won’t get paid. I AM AT THE END OF MY ROPE and I don’t want to live like this for the rest of my life. I’m only 51 and want to enjoy my grandkids. I don’t know what to do anymore!

  15. Kristine (Krissy) at 6:46 am

    Makes me so sad when I read what you have been through and continue to go through. I’m glad you have a loving and supportive family. I will continue my hope for a better life for you, Brooke!