by Heather Plewes
After a mountain biking accident left me with a lacerated kidney in late January, I spent several weeks in hospital on intravenous Hydromorphone (also known as Dilaudid). The drug is a very strong pain medication of the opioid class. After discharge, I continued to need it orally for about 5 days for extreme pain, but when I didn’t need it anymore, I stopped taking it. I didn’t want to be on it for any longer than was absolutely necessary.
I had been taking 3 milligrams every 3-4 hours, when one day, I found I could stretch those timings to 5 hours or more. At midnight, I took only 2 milligrams, and then managed to go seven hours with taking any. This was the first night I hadn’t awakened multiple times in severe pain. In the morning, I woke up feeling substantially less pain, so I decided I was done with the Dilaudid. I put the bottle away and switched to extra strength Tylenol (anti-inflammatories such as ibuprofen or naproxen weren’t an option due to risk of internal bleeding).
I was conscious of how I felt that day. Did I feel any urge to take more? Did I feel like I missed it? No and no. I was so proud of myself. “Look at me”, I wanted to shout from the rooftop (ok, from my couch, I was still seriously incapacitated), “I took opioids and didn’t get addicted!”
The following day I realized I was feeling more emotional than usual – crying over Instagram posts and videos on Facebook (more than usual!) and feeling overwhelmed with gratitude for all the people who were taking such good care of me. I wondered if these feelings were related to stopping the opioid, but it didn’t really matter to me. I obviously wasn’t going to go back on those crazy drugs just because I was a little weepy!
The second night I awoke multiple times drenched in sweat. The next day, the diarrhea started, but I figured it was just because I wasn’t taking such constipating pain medication anymore. The third night the sweats were even worse, and the day after that, I had sweats and chills even after getting up. I was nervous. Did this mean I had a fever? Was it a sign of infection? I texted my partner at work to ask if he thought I should be worried. Back came his simple reply, ‘could it be withdrawal?’ Hmm. I cracked open my laptop to google ‘Dilaudid withdrawal symptoms’.
There it was, on website after website: the mood swings, the sweats, the diarrhea. There were many more I would experience in the days that followed: muscle pain, restlessness, irritability, headache – even excessive sneezing and dilated pupils. All of these were in addition to the pain, weakness, and exhaustion I was already experiencing as part of my recovery from the trauma itself.
I was almost embarrassed. How could I have been so naïve? I had thought that because I wasn’t feeling any cravings or emotional desire to take the Dilaudid, that I wasn’t addicted. The fact is, addiction is a physical dependence – not an emotional one. The physical (and emotional and behavioral) symptoms of withdrawal are caused by changes to brain chemistry. As someone who has struggled with depression since adolescence, I know firsthand that mental health isn’t just between my ears – it is as real and as serious as physical health problems, and yet I had convinced myself that I was somehow above the clutches of opioid addiction.
In the weeks that followed, as I continued to recover slowly from my injury, I found myself thinking about the experience I had had and examining how it could have been different. I realized that many in the medical profession – from the doctors and nurses in the hospital, to the pharmacists who dispensed the Dilaudid – had warned me about the addictive properties of opioids; indeed several went so far as to shame me for taking them or question whether I really needed them, but no one had given me information or tools to help me safely stop taking them. I looked through my discharge paperwork from the hospital – nothing. I looked through my pharmacy info sheets – nothing.
There is something seriously wrong with this.
How can medical professionals prescribe these drugs and then completely fail to inform patients about how to safely discontinue their use? My withdrawal experience could have substantially less unpleasant if I had been given information about what to expect and how to minimize symptoms. I would never have simply stopped use ‘cold turkey’ if I had known it would be so awful. A basic information sheet with my hospital discharge papers or my pharmacy paperwork could have outlined simple tips to lessen withdrawal symptoms.
The media is permeated with stories of the opioid crisis in Canada. We hear about addiction support programs, rehabilitation centers, naloxone kits in public spaces, and safe injection sites and I fully support these measures. We must care for those who are already in the clutches of addiction. But what about prevention? How can we decrease the number of individuals with access to these drugs in the first place? How can we help those who must take opioids temporarily to safely discontinue their use?
In the past, following relatively minor injuries or surgical procedures, I have been prescribed opioid medications including Oxycodone and Oxycocet, but I only filled one of those prescriptions, and I never took a single pill. One glance at the prescription, and I thought ‘No way!’ For me, the fear of addiction to the drugs was much greater than my need for such strong pain relief. I have family members and friends who have had similar experiences. But there must be so many other people, just like us, who were afraid of the consequences, but were in pain, so they took the drugs prescribed to them by a medical professional they trusted. How many of them struggled to stop taking them when the pain decreased? How many were successful? How many became addicted? In 2018 in Canada, more than 11 people lost their lives each day to opioid-related causes – over 2000 deaths in the first six months of 2018 alone.
I now know what it is to need relief from extraordinary pain, but I also know that the pain I felt from the previous, more minor surgeries didn’t warrant such strong drugs. People need to understand that minor to moderate pain itself is not a crisis. Pain is a danger signal to the body. Pain tells us something is wrong. But if patients are told to expect some pain and that it isn’t a sign of anything wrong, it is just a temporary condition that will pass in a day or two, what possible reason can there be to prescribe opioid drugs? When there is a such a high risk of addiction, surely the risks outweigh the benefits. The first step toward tackling the opioid crisis in Canada is to discourage physicians from prescribing opioid drugs in all but the direst of circumstances.
Secondly, when it is unavoidable to prescribe or dispense opioid drugs, it is essential that patients be given sufficient information, tools, and support to safely discontinue their use as soon as possible. At the bare minimum, this is a conversation that should take place between the prescribing physician and the patient, and again between the pharmacist and the patient, about how to manage and minimize withdrawal symptoms. Printed information sheets should be provided with hospital discharge papers and pharmacy documents. Community support contact information should be included: websites patients can visit for more information, email addresses for community addiction support contacts, hotline numbers for support by phone. We must equip patients with knowledge and tools to support their safe withdrawal.
This story ends happily, at least for me – the withdrawal symptoms abated within about a week. I’ve since returned all the unused pills to the pharmacy. I hope I will never be in so much pain that I need to take anything like them again for an extended period. But I realized that perhaps I could turn something negative into something positive. Maybe my injury and recovery could take on greater meaning by using my experiences to advocate for better care for other patients.
I’m not an ‘everything happens for a reason’ kind of person. I basically crashed my fat bike because I was having too much fun; beautiful weather, ideal conditions, right at the end of a fast, fun ride, and within sight of the parking lot. But as an indomitable optimist, I do believe in making lemons into lemonade.
I am uniquely equipped to use my voice to speak up on behalf of others. I am privileged in many ways and I believe that it is incumbent upon me to use my privilege to benefits those less fortunate than me. My privilege in life, in part, helped me to avoid a problematic ongoing opioid addiction: I knew about the risks of addiction and am well-informed about the opioid crisis, I had an excellent support system and a happy, successful life to return to after recovering from my injury. Many are not so fortunate, and these people are disproportionately likely to develop addictions.
I believe we must call on our Canadian healthcare system to make changes that can better prevent opioid addiction – not just treat it.
We can do better. We can make A LOT of lemonade.