Never Trust A Fart: Crohn's Disease
Growing Up Sick.
Adolescents is a time of change that everybody goes through. If you were a boy, typically, your voice gets deeper, your peach fuzz turns into a crustache with shitty sideburns, your face looks like a smashed up bag of bagel pizza bites, and last but not least - uncontrollable boners. Needless to say a lot of shit happens and well, for me, I mean that literally. I was diagnosed with Crohn's when I was 14, I had just started my freshman year of high school and I was really sick but I hid it from everyone.
Let's back up though, it's hard to tell my story without first explaining that I am twin and have been for 28 kick-ass years. My brother, Devin, was diagnosed with Crohn's 14 months prior to when I was diagnosed. I watched him get sick first before it started happening to me, it was really scary and it was the first time in our lives where he was experiencing something different from me. We would spend long days making trips to the hospital where I would watch him get poked and prodded and drained of blood. Not being a fan of needles, I sat out from watching those parts. Through this whole process, which I would assume must have been traumatizing for him, led to his diagnosis and eventual road to becoming a healthy teenage kid again. I wont speak much on his personal experience, however, for me, at this point, it was just the begging. It started slow but in the exact same way it happened to my brother. A few more visits to the washroom here, a little weight loss there, I told myself "I am not getting sick, I'll get over this." I was wrong.
Now to understand Crohn's you've got to know that it affects people in many various ways, for me, when I got really sick, the inflammation of the disease happened in my bowel, aka I had to take a crap every 3 hours at minimum and dealt with a lot of abdominal pain. Sometimes to the point of not being able to stand up straight. I lost all of my energy, a lot of weight and with the constant toilet sitting and horrible pain, I hid as much of it as possible from my friends, my family and my brother. I was in complete denial and scarred all at the same time. It wasn't until blood started to come into the picture that things started to become real for me, I knew that you could only bleed out of your ass for so long before eventually you would probably die. So, I finally conceded to how sick I was and brought it up to my parents. Things started to happen pretty quickly from there. I got the same poking, prodding and blood draining as my brother but just in a much shorter period of time. The doctors were fairly certain that I had the same condition as my brother, however, like everything in health care, they needed to be sure. Skip forward about 1.5 months after I started the serious rounds of testing and we land at the hospital where I probably had some sort of camera device stuffed up my butt, thankfully I was heavily doped up for all of those. They were doing a full lower gastrointestinal scope to help determine how bad the damage was from my on going neglect. They also needed to take several biopsies for soft tissue testing to make sure I didn't have anything else lurking around. It was during this procedure that things went from bad to worse for me, my bowel was so inflamed and damaged that when they tried to compete the biopsy then ended up going straight through the wall of my bowel, creating a not so ideal hole. So, they brought me out from the procedure and quickly woke me up from fog I was in just to let me know that I needed emergency surgery and was heading straight into pre-op to fix the hole they made. The 25 minutes between waking up and be put under general anesthetic seemed like an eternity, for the first time in my life I contemplated my own mortality and realized that my parents and family, even though supportive and loving, couldn't do anything to help me fight this battle happening inside my body.
Luckily the surgery went smoothly, although the doctor reluctantly shared the news afterwards that the hole had healed over by the time they'd gone back in to fix it, making the surgery ultimately unnecessary. Regardless, there I was, in the IWK Children's hospital on one of the top floors recovering. My mother spent every moment through the following days with me, she even slept in the chair next to my bed every night I was there, I remember some of my first memories from after the surgery being of her. They had me on a lot of morphine but even that wasn't dulling the discomfort, I couldn't really move and didn't really want to. Notably on the third evening I was in the hospital Halifax was hit by Hurricane Jaun and I had a front row seat to all of the action. The following days and weeks after I felt much the same as the as the ravaged city around me. The storm was over but there was one hell of a mess to clean up.
I was officially diagnosed with Crohn's by the time I left the hospital and the doctors didn't waste any time starting treatment. Through a combination of anti-inflammitory medication, which I would end up staying on in high doses for many years, and steroids. I was able to start the recovery journey of living with Crohn's. I was back in school about 3 weeks after the surgery but didn't really speak to anyone about my stay in the hospital or newly diagnosed condition, like the sickness before, I hid it away from people. That didn't really change until I was in my 20's, I didn't want to be looked at as being different. I was really lucky to have my brother through all of this, although we never spoke of our conditions in length or often, he was a strong support system while trying to find a sense of normalcy. The doctors gave me three fairly strong guide lines to having the most success with keeping my flair ups/inflammation minimized. 1.) Don't smoke, it's known to be a leading cause of inflammation. 2.) Don't drink sugary - caffeinated drinks, in fact processed sugars can reek havoc on most people in one way or another. 3.) Avoid excessive stress when possible. The rest of it was really up to me to figure out. Things like diet and exercise were definitely important, however, when your a kid that eats cereal most meals, candy as much as possible and really lacks the sense of a true balanced diet, changing your eating habits is no small task. The exercise side of things to me was easy, I wasn't a sports kid but I loved skateboarding and knew that was something I focused on as a goal to get back to through my recovery. Also I quickly figured out that water was my friend, the more I drank, the better I felt. Eventually over the course of years, many more visits with doctors and specialist, and through many different stages of trial and error with my diet, I navigated my way to a point of weening myself off of my medication. I don't recommend anyone try this without consulting your doctor/specialist but I was able to reach a stage of complete remission by the age of 19 and I was sick of taking pills everyday. I finally felt like I was reaching a point of really living a lifestyle that made me feel healthy and strong, however, less than a year later myself and my brother started to become sick all over again but this time it was different. Unlike the sickness we had when we were kids with Crohn's, this was an all new batch of symptoms.
Primary Sclerosing Cholangitis (PSC) is a disease of the liver that is usually associated with inflammatory bowel diseases. It is a condition that inflames the bile ducts of the liver that carry the digestive liquid to your small intestine. The inflammation causes scars within the bile ducts. The scars make the ducts hard and narrow and gradually cause serious liver damage. Interestingly we were diagnosed within a shorter time frame of each other than with Crohn's and our experiences were slightly different as well. I don't know in detail the extent of my brothers symptoms, however, my symptoms ranged from itchy feet/skin, yellowing of the eyes and even full blown Jondis. There are some theories that the massive amounts of medication they prescribed us for Crohn's that we took for over 5 years may have exacerbated the development of the the disease. My liver wasn't able to filter the toxins in my blood properly at one point and I had to have a stint put in to my major biliary duct to prop it open so the bile could get to my intestine and I could digest food properly. Only I needed to have this procedure done. This of course was compounded with small flare ups with my Crohn's, however, based on our medical history, diagnosing the condition was much quicker as we addressed the problems as they happened. PSC is a degenerative condition, unfortunately there is no cure only even individual treatment of different symptoms. The only permanent solution is a liver transplant.
I am happy to say that today and for the past 8 years I have lived in remission from Crohn's, flare ups can happen from time to time but thankfully they're only temporary, and I am able to manage my PSC quite well to match my lifestyle. I can only attribute my success with living in remission to a balanced diet, an active lifestyle, drinking lots of water and of course luck. Being able to manage Crohn's & PSC without medication is very rare, I don't take it for granted. To those that may be living with medical conditions and suffer from chronic symptoms or even pain, your strength inspires me, I hope one day you can reach a point that allows you to live comfortably and healthy. I'll wrap this up with stating the obvious fact that I am not an expert on Crohn's or PSC, I am simply someone who has lived through and lives with the diseases. The examples above are my experiences and the understanding I have developed as the diseases pertain to me.
Lastly, If you made it this far, thanks for reading and a huge thanks to Brian, Jeremy and Taylor. Sick Boy Podcast is rad as fuck, I wish there was something like this when I was younger, it would have made the world seem a whole lot bigger.