By 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.