For about the last 6 weeks I've been on a constant dose of Dilaudid or hydromorphone. My gall bladder is unusually large and was causing extreme abdominal pain, to the point that I would lay in the back yard at 2 in the morning because the cool grass felt a little better than laying on my couch. Fortunately, my liver doctor has prescribed a drug that is designed to bust up gall stones and I've stopped being able to feel my gall bladder with my hands because I think it's working.
It was actually funny because I googled my symptoms (I know better but I had nothing to do) and I diagnosed myself with an enlarged gall bladder. At one of my appointments I told my doctor about it and he looked at me sideways and felt around my abdomen. The good news was that it wasn't my liver but he couldn't feel anything else. I protested that I was sure it was my gall bladder but because it wasn't an area that was cancerous we were both fairly happy. I had a CT scan a couple of weeks afterwards and asked him about it there and he said, "actually, your gall bladder is the size of a sausage!" I replied, "I knew it!" We both chuckled but deep down I was relieved to know what I had been feeling wasn't something dangerous.
My concern now was that the drug was initially prescribed to me by an ER doctor when I came in for pain relief and my doctor just re-wrote a prescription to continue on it. They asked my symptoms and I explained that it was an egg shaped lump in my abdomen and pain; I also told them that Dilaudid seemed to be the only thing that worked for me. For whatever reason Morphine doesn't seem to touch my pain. Maybe I just have the wrong receptors for it. They obliged and dosed me with Dilaudid and wrote me a prescription for the drug and sent me on my way once my pain was under control. I was upset because I wanted to know where the pain was coming from. I showed them where I felt it and was hoping for an ultrasound or some kind of imaging that might indicate why I was in this pain but they just seemed to want to get me out of there and on my way.
My goal was not to drug seek, I wanted to stop hurting. Given the choice
I'd rather treat the source of the pain, not the pain itself. Regardless, this entire time I have been treated with Dilaudid. This
has left me feeling like absolute junk. I walk around in a haze, some
days unable to even find the motivation to get out of bed; and when I do
all I want to do is have a snack and get back into bed. I attempted 2
of my Ironman races on the drug but was unsuccessful and I think it
played at least a factor in my inability to finish those races. Days when I have to referee a hockey game I need at least a 3 hour nap mid day to get to the rink or I won't have the energy to even get dressed at the rink.
At one point in September I tried to get off the drug and went right back to it after suffering through the sweats, shakes and intense vomiting. I was no longer taking the drug to avoid pain, I was taking it to not go through withdrawal. I was addicted to a narcotic. What the hell had happened? How did it happen so fast? What wasn't it more fun?
I don't blame my oncologist at all. He is trusting the judgement of another professional who felt the best course of treatment is to hit me with the drug so I'd feel better. My frustration is with the ER doctor and his apparent lack desire to do any digging. See pain - give pill. How many drug addicts are being created through this manner of treatment? Then, when I'm sent on my way, there was no suggestion or recommendation of what to do when I want to get off of this powerful narcotic. Is his expectation that I just get hooked on it and live that way forever? Whatever length of time that may be?
We accuse many people in our society of being drug-seeking addicts and I openly admit I had the same prejudice. We see these people going to the ER to get pills to make them feel better. Who knows how many of them got hooked on the drug the to begin with by a legitimate complaint that may result from the street life so many of them live? Imagine being one of our city's indigent and getting into a fight or being assaulted downtown one night. You're taken by ambulance or police car to the hospital and to treat your pain from broken ribs or black eyes with a narcotic. After a couple of days in a bed you're discharged with a small number of pills or one last IV dose and then sent on your way. I know that if I wasn't counselled about what to do when the drugs run out there is NO chance that a homeless person is being given any of this information.
My biggest saving grace, I'm certain, is that I have a good education and the motivation to get off of this drug in the least harmful manner possible. I have resources that I can seek out, I have access to the internet, I will be able to do this eventually. But for those in our city (or country) that are less fortunate they get stuck on an addiction treadmill that may be impossible to get off of.
I hope this doesn't come off as too sanctimonious or left wing for my friends and family but I hope over this Thanksgiving weekend you can look at your own life and appreciate the great things you have. Not every day is great but there is great in every day.
In the immortal words of Bill S. Preston, Esq and "Ted" Theodore Logan:
Sunday, 11 October 2015
Sunday, 4 October 2015
Saturday October 3rd is world ostomy day. Having lived with my ostomy for nearly a year now I feel like I'm becoming a bit of an expert.
For those that don't know an ostomy is when you have some type of issue with your intestines and so a portion is removed and the end is, for lack of a better word, poked through your abdomen. This is where you now poop.
Because of the nature of this medical procedure not many people are open to talking about it. I, however, was not raised with a filter (thanks mom) and so I'd like to explain frankly what it's like to live with an ostomy. It sucks.
Now, for people that suffer from Crohns or collitis it may be a huge relief from the debilitating gut pain that many endure. However, in my case, it was just a necessity to remove my tumor. Now I face the day to day hassle of living with a bag strapped to my belly.
The set up has 2 pieces. The first is a flange. This flange requires you to cut it to fit the size of your stoma. (Haha, it autocorrected stoma to aroma which is fairly applicable) after cutting it to fit, you apply a paste to the appliance and smooth it out. Then you carefully align the flange to your stoma and press it on. Then you remove the backing and stick the rest of it to your belly.
Then you snap a bag onto the flange. To get the best adhesion you should sit or lie down and keep pressure on it for at least 15 minutes.
Every time I leave the house I need to ensure that I have sufficient supplies to get me through however long I plan to be out. It's become habit now but there have been times where I have to leave something I'm really enjoying because I'm out of bags. The biggest hassle I've run in to is exercising with it. The sweat can cause the flange to lose adhesion and leak. I'm unable to do certain exercises because I can't lay flat on my stomach. Additionally, because a stoma is created by punching a hole through your abs it is considered a hernia. This limits the lifts I can do. Finally, if my bowels move while I'm exercising I need to stop and change my bag because the weight of a full bag can either pull
off the flange or pop off the bag. Either of which is NOT COOL. In fact it stinks (see what I did there).
Probably the most troublesome area that's been affected is sleeping. I love sleeping on my front and will flip back and forth but it's almost impossible now to sleep facing to the right. This position places my stoma flat against the mattress meaning any bowel movement could blow off the flange. Also, when rolling over I need to be exceedingly careful not to catch the bag and pull it off. I've done this a few times this year and it means laundry time at 2am.
The public awkwardness that comes with a stoma can also be brutal. The stoma does not have a controllable muscle so you can't clench up. Without warning a stoma can get active and either fill the bag or cut some of the loudest farts you've ever heard. Depending on the situation you're in this can be mortifying. People that know you are almost always awesome about it; but if you're in a meeting or on an elevator where people don't know your deal this can be unbelievably embarrassing.
This blog is not intended to be a sob story. I just want to be completely open and honest about what life entails. If you know someone in your life that has a stoma and are too afraid to ask them about it please understand what they're dealing with. It is a 24-7 job maintaining it. I am thankful to be alive as the procedure removed my source cancer, but it is not without its problems.
If you have any questions I'm an open book so please don't hesitate to contact me.
I also want to take this opportunity to thank Coloplast for sponsoring my tour. They have made having a stoma more bearable. By making the flange more flexible it is more comfortable and by using more appealing materials it's not as embarrassing when your bag sticks out under your shirt. This may seem like a small thing but it can be huge to many people.