Some would say I have been dealt a shitty hand in health. And those who know me would likely tell you I have a fairly positive predisposition no matter what gets thrown at me. There is not much by way of my medical journey that gets me mad. Upset, yes, but mad… not that often. I only get truly mad when a doctor or a nurse challenges me about my own body because what I tell them is counter to what the science dictates. And when I have to prove to someone that I am right by demonstrating through pain, it just makes me madder.
Let me back up. Back in 2007 I had my first laparoscopic surgery. It was to remove gallstones that we knew had been there for quite a few years and some would argue that I was too young to be having as much pain as I said I had. Those details don’t matter. What matters is that during my recovery I was administered demerol, an opioid that was quite routine for post operative pain. The rest of the story is anecdotal as I went under respiratory arrest and apparently was starting to go blue. The next thing I remember, 4 nurses and a doctor were huddled around me while I feverishly tried to crawl my way out of bed. That was the first and last time I was ever given demerol. For years I wore a medic-alert bracelet in case of any emergency where a pain medication would be given while I was incapacitated. The next two surgeries I had for endometriosis removal was (2012; 2018) under the care of my mother who ensured that post-op I wasn’t given anything stronger than a tic tac. So you can imagine how fun recovery was for both of those.
But 5 years later, circa summer 2018 my life was flipped upside down. I have been in and out of various hospitals over the last year, with many incidences of morphine administration. As many patients who suffer chronic illness know all too well, morphine tends to be the standard protocol for anyone presenting with advanced pain in emerg. What they dont tell you is that morphine may be administered without your consent. In July 2018 I was accompanied to the hospital by my boyfriend who had never taken me to emerg before. They gave me morphine and I was writhing in extreme pain. This was the first of my morphine journey. When they tried to give me a second dose of morphine my boyfriend refused on my behalf, having seen what the first dose already put me through. Later that weekend, he and I scratched our heads trying to understand why I had the reaction to morphine. There seemed to be nothing out there talking about exacerbated pain with opioid administration. Much to my chagrin, I was back in emerg exactly a month later, this time via an ambulance, half out of my wits and in no condition to explain the reaction I get to morphine. Different hospital, different day, same outcome. Writhing in pain, cramped up in fetal position, in sweats. I was in the hospital for 10 straight days, with my mother who had flown across Canada to be with me, and hooked to a drip of hydromorphone the whole time. By the time I had some energy revived in me, I was puzzled why the hydromorphone was sitting just fine, yet its sister ‘morphine’ nearly killed me twice. And lest we forget Demerol which literally nearly killed me. I had no more fight left in me that week but something told me this wouldn’t be the last of my encounter with morphine.
I’ll be honest, the struggles with the hospital system was enough to deter me going back to emerg time and time again. I have endured several bouts of pancreatitis in the comfort of my own home just to avoid the rigamarole of the hospital waiting rooms, puzzled looks on doctor’s faces, blood test after blood test, and empty promises. I reserve the hospital for times in which I cannot breathe, Im puking and pooping at the same time, or none of the opioids I have in my medicine cabinet are working. The latter is what happened this week. My endometriosis sitting on my diaphragm decided to flare. No rhyme or reason, just something that happened. On Saturday afternoon I called it. Time to go to emerg. Long story short I was not given any pain meds because my boyfriend lovingly contested the morphine they wanted to give me. Instead I was sent home with oral hydromorphone (which by the way does nothing for me. Only the drip has an effect). Anyways, the doctor was nice enough to ask me to come back in Sunday morning and skip the line so I could get a redo on my blood work. The theory was that perhaps pancreatic enzymes would show a pancreatitis flare over time. When we went back in the blood work didn’t show anything but this time, after no reprieve from the hydromorphone I gave in to the morphine. My boyfriend warned me, so its not like he agreed with my decision here. Nonetheless I was given 1mg (one fricken child sized dose) of morphine and my body was in agony. I barely could breathe, I was clenching on to my abdomen like my insides were about to fall out. You should have seen the looks on all their faces. This was exactly what we told me, but I think they needed to see it for themselves. I’ll say this. I still don’t think they believed me because they offered me a second dose which I refused before they could even get the question out of their mouths. Instead they gave me a drip of hydromorphone which unfortunately exacerbated the effects of the morphine. The damage had been done.
I came home and cried myself to sleep in a ‘drunken’ haze from the morphine-induced pain. This morning, as things always look different in the day, I started to think long and hard about my reaction to opioids. I remembered that once in Vancouver, alone, I took some tylenol 3s I had on hand for my endometriosis pain and it too caused this same reaction. There is no way I am the only one who has this reaction. The more I started asking around, the more I was starting to get some head nods in my direction from other patients who have the same response. Today its being coined as Opioid-Induced Hyperplasia. I could tie it up in a nice bow there, as this will undoubtably solve a lot of the mystery for some of you. If you’re content with this theory, I am so glad I could help. For me unfortunately this still doesn’t solve my problem. You see part of the theory behind opioid-induced hyperplasia is that your body becomes sensitive (not tolerant) to opioids because of overuse or over expose to opioids. This doesn’t fit the bill for me. Certainly when I was 20-something recovering from my gallbladder being removed I had never touched an opioid before in my life. And in between 2007 and 2018 I had not taken any opioids like they describe in the link above. They do say there may be a genetic component but sheesh, if you look at my background, I am the only person in my family with endometriosis (I’m talking ONLY) and I’m the only one person in my family with Ulcerative Colitis or any form of IBD. So if I were to hedge a bet I’d say genetics is not the answer here.
To avoid going down a rabbit hole of chemical compounds to prove the similarities and differences between opioids, lets just say the science doesn’t make sense. Demerol and morphine should not be eliciting similar hyperalgesia/hyperplasia and it would be assumed that hydromorphone would show similar outcomes as hydromorphone is converted into morphine during metabolism. My hope, however, is to spread the word about this and hopefully meet others who have experienced similar reactions.