Well, today is officially the day where one year ago I underwent a colonoscopy and was officially diagnosed. Although I made a post not that long ago about first being sick, your diagnosis date is a pretty monumental day. There is no more “it could be this, or this, or this” “Let’s hope it’s just this” or continually convincing yourself that you have cancer.
Nope. Once you get that diagnosis, there is no going back. That’s it. Well I mean sometimes they misdiagnose you. But still, it’s usually some form of an IBD.
One year ago today was a surreal day. I knew there was something wrong and was warned of the high possibilities of having ulcerative colitis, but I still cried when I recieved my diagnosis. Because I could no longer live in denial. It was now time to face the music.
But even after my diagnosis, I still very much lived in denial for awhile. If I could give advice to anyone just beginning their journey it would be this:
Prepare for a very long road ahead of you. If you were like me, in the beginning you didn’t actually feel that sick, nor did you look sick. In the beginning I just felt off. I was tired, running to the washroom a lot, and just didn’t have energy. Sometimes I had ulcer pains, but not often. As we started introducing the drugs, it was like my disease came to life in order to rebel against getting better and I began to feel a lot worse. I immediately panicked that maybe going on drugs was a bad idea and was actually making things worse. And maybe it was?
I went through 7 different drugs, 3 rounds of steroids, 2 colonoscopies, and was only hospitalized once. I think that I should count myself pretty lucky, because it could have been a lot worse. My secret? Just listening to my body. I would write down my symptoms, google when I didn’t know, and harass my doctors for answers and inquiries about what was normal and what was not. Be an informed patient. Know what to look out for. Know how you felt before you started the drugs and what’s changed. Ask questions. There is no such thing as a stupid question when it comes to your body. If something feels off, it’s probably because something is off.
Not every drug will work and that’s okay. It’s a tricky disease because it’s a little different for everyone. Also biologics are not as scary as i thought they would be. Prednisone by far has kicked my ass the most. Well except for Imuran. I could not tolerate Imuran at all. It’s all trial and error. It’s a long process, but at the moment it seems to be the only process. And things can change. Quickly too. So stay on top of yourself. If I hadn’t fought for my body back in August, we would have never known how fast it had spread in my colon and things would have been a lot worse than just being on “cancer watch”.
Be patient with yourself. It’s a hard journey that is different every day and every hour. Mornings are literally my worst time but my mid afternoon, it’s like nothing happened. I have literally puked and shit at the same time and then two hours later felt good enough to eat a huge bowl of ice cream (although probably wasn’t the healthiest of choices). Have you ever done that at the same time? It is by far the world’s most disgusting feeling. I cried for 10 minutes after because I couldn’t believe I experienced that. I think I developed a mild form of PTSD from that experience because now I get a bit of anxiety when I feel like I’m going to puke.
But it is a long journey. Some days you will feel on top of the world and usually on those days you end up doing way too much because you want to take advantage. Other days getting out of bed seems like the biggest chore. Showering is a chore.
Physically what your body goes through sucks. You gain weight, you lose weight, you lose hair, my eczema got worse, my eyes would be swollen, my joints are so achey, I get random bruises, my ulcer pains are unbelievable some days and poop attacks are a whole other level. It has become a norm for me to cry when I poop. It’s just an automatic response. Same with getting a runny nose when I have a bad attack. I consider it a win when I only cry a little bit and just have to take my shirt off because I’ve literally worked up a sweat. That’s a good poop. A bad poop is when it feels like I am about to birth the anti-christ and usually the amount of blood in the toilet reflects that image, I have to completely strip down because I am so hot and uncomfortable, and I am literally practicing my breathing just to try and remain calm and get through the attack. I usually get so winded that after I have to lie on my tile floor and try to get it together before I can drag myself back to bed. Although I’ve had these attacks at work and in the mall before.
I found emotionally, what you go through is way worse. I can look back at all the things I have gone through and not once have I ever thought of death. But I can say that there have been really low points in my journey, where the thought of death and it all ending brought me comfort. I wanted it to stop. I wanted to just fall asleep and never wake up again. Am I ashamed that I allowed myself to get this far down? No. Because I was grieving. I was and am in pain. I wasn’t ready to change. I was disgusted in who I was becoming and how I looked. There are times where I have absolutely hated myself and who I had become. I didn’t recognize the person I had worked so hard to become this far. I was ashamed of my body and how rapidly it changed before my eyes. I hated how I looked. My chubby cheeks, thinning hair, little tummy of bloat, and double chins. I didn’t feel cute or sexy, so my sex drive is non-existent even still to this day. I felt uncomfortable in my own skin. I have felt like a prisoner in my own body. I hav felt absolutely mad between the brain fog, the anxiety, and the depression. I lost sight of who I was and didn’t know how to help myself. And some days I still feel all these things. So yes, death was comforting. Because it meant it ended. I didn’t have to think of these things and so much more. I could just be.
Would I have actually done it? No. I never had a plan. Just thoughts.
But everyone I have ever met will always say that the emotional roller coaster aspect of it all is the hardest and it’s one of the least talked about side effects. At the time I did feel ashamed and weak for feeling all of these things. But it’s all part of the process and there is usually a light at the end of the tunnel. You just have to trudge through a fuck load of bullshit before you get there. But you get there. Eventually.
A year is a long time. But in the grand scheme of things, it’s not. This is a lifetime disease, so I am only at the beginning. I’m not in remission yet, but Entyvio seems to be having some sort of good effects. We are down to 12 mg of prednisone and I am still staying afloat! No major crashes yet! I have my follow up progress review next Thursday so we shall see what me results are saying.
But here is to a lifetime commitment colon. Here is to more future ups and downs, hopefully remission soon, and hopefully we actually stay together. A lot of people in their journey have to break up and part with their colon. I would kind of like you to stay in my body, but if that’s not what’s going to get me better then maybe it’s time to start thinking an accepting, as Taylor Swift would say, that we are just never getting back together.