Now that I’ve been very open about my diagnosis, I often get bombarded with questions, usually from people who genuinely care and just want a better understanding. Of course, I’m always open to answering questions and have gotten used to answering the question “how are you doing”, because honestly it is what it is! But there are some things I wish people just knew. Especially because this diseases effects so many people.
Hellooooooo, my city is apparently the epicentre of the disease! With it being such a huge problem, I always wonder how we all know so little about it? Hell, I barely knew anything about it and I have it! Sometimes I still feel like I’m navigating all of this blindly.
So here is what I wished the world knew:
- UC and Crohns are NOT the same thing. The similarities stop at they are both Irritable Bowel Diseases and Autoimmune diseases. Crohns affects you anywhere along the digestive tract, including your throat! Ulcerative Colitis just affects the colon and the rectum. But if someone doesn’t know what Ulcerative Colitis is, my go to response is “it’s kind of like Crohn’s disease” because apparently more people know what that is.
- It’s life altering, not life ending. I’m not saying there aren’t cases where someone hasn’t died from it, or has been in the hospital for serious complications due to the illness. But generally if you catch it soon enough and manage to find a treatment plan that works for you, you can stay in remission for a long time. You just have to take the disease serious enough and really understand your body and it’s triggers. And be patient to your body. It is attacking itself after all, so you are under a lot of stress, physically and mentally.
- There is no cure, and no my eating habits won’t change it. You don’t know how many times I have heard the statement “Oh man, this is why I eat healthy now and try to live a stress free life.” My eating habits or stress levels did not CAUSE me to get sick. It may have increased my chances of developing it and for sure stress makes me feel worse on flare up days, but they actually don’t know what causes UC. Hence why there is no cure for it. There are tons of theories out there, but none of them have been proven to be the actual cause of the disease. This is what makes managing it so tricky! How can you help your body stop attacking itself, if you don’t even know why it’s doing it in the first place?
- At least you don’t look sick. Oh honey, trust me. There are days where I do. There are days I walk out of my room and my mom looks at me so heart broken because I look frail (weight loss), white washed, and just sunken. Some days I move like the elderly because of how weak and faint I feel. When I was on Imuran I almost always looked sick because I was puking! But now most days I don’t look sick. Most days makeup saves my life. But I feel sick and psychologically, that’s the hardest part. Knowing that how you feel on the inside isn’t matching what you look on the outside often means people don’t take you as seriously! Never judge a person, you never know what battle they’re facing.
- It’s not just a pooping disease. It’s so much more than that and that was the biggest hump I needed to get over. You experience so many different symptoms and then you need to differentiate if it’s because of your medication or the disease itself. And this changes so often! I’ve been trying to track my symptoms but everyday is a new day. It’s really a rollercoaster. Somedays I don’t really feel my symptoms so I can lead a normal full life of going to work and doing things after and other days I can barely manage to convince myself to get out of bed.
- No I can’t hold it. When we were walking to the washroom at the airport on my way home I NEEDED a washroom. It was a now or never thing. Walking with your butt cheeks clenched so tight while your bowels sing their warning song that it’s about to happen is so stressful. And of course there is a wave of relief when you see the washroom and I always say “thank god” out loud. My friends sometimes poke fun at me and say “it’s not that far” but let me tell you, it is. That was the day I stepped foot into the washroom and my body decided it couldn’t wait the 30 seconds and I started to go right then a there. Holding it has become a milestone for me.
- Naps won’t solve my fatigue. One of the biggest things I’ve noticed changed since I’ve been diagnosed is my energy levels. I’ve been on Prednisone for almost a week now and everyone talks about how you develop terrible insomnia or how on Imuran you have so much energy that it can actually cause you to feel anxious, but I have yet to experience this. Instead I crash, hard. I can barely stay awake after 10pm and it’s this full body exhaustion where I feel like I just ran a triathlon and also pulled an all nighter. I become a narcoleptic and can fall asleep anywhere at this stage and no amount of naps can pull me out of it. If anything, naps sometimes make me feel worse and more tired. Plus, the only “insomnia” I experience isn’t even because I’m not tired, it’s because my body decides 4:30 am is the best time to have half an hour poop attacks and then between that I’m up every hour or two because I can never trust if it’s just a fart that I’m about to experience.
- It really toys with you mentally. Changing my mental thought process has been my biggest battle. I can handle the pain, the nausea, the fatigue, the sore body, the crappy body temperature regulation, the rashes, the weight loss and gain, the energy levels, the poop attacks, ect. But when it comes to my mental health, I tend to falter. It’s so hard not to compare to your “old life” when you were healthy. It’s so hard not to shed a tear for the person you once were and now are being forced to change in certain ways. It’s so hard to commit to anything because you never know what will happen in the next 20 minutes, never mind hours ahead. It’s hard to love yourself, when your body physically is not loving you. It’s so hard to not feel worried, anxious, or upset as you watch yourself change and you’re not sure what direction life is taking you yet. You just feel so overwhelmed and isolated in a way. You feel like a burden or a nuisance. And medication definitely toys with your emotions. At some point, sometimes you don’t really recognize the person you’re becoming or feel like yourself and this can be really hard because it all kind of happens so suddenly.
- No, I’m not embarrassed anymore and why should I be? I always find it funny how much people walk on their tip toes around me when they ask about it. Don’t! Just ask your questions! Ask me about my poop. Ask me about my symptoms. Ask me about my medication/treatment. I don’t care. It’s a part of who I am now, and if I want to accept this then I can’t make a big deal over it and neither should you. It’s just life. Everyone poops. I just poop a little differently with some more serious side effects and consequences unfortunately. I found having a sense of humour about it has been my best way to combat it. When I go out and have a gassy poop attack in public, I walk out of that stall with my head held high and if anyone says anything or looks at me weird I just say “Sorry, ulcerative colitis will do that to you.” And generally no one says anything after because what’s to say? “Hey man that sucks?” I’m waiting for the day someone says “Oh man, I know that feeling all too well!”. But don’t be embarrassed for me, because I’m not.
This is my list so far. Is there anything you would add? I’m sure as I continue to navigate through my journey I’ll continue to add to this!