So, you were just diagnosed with ulcerative colitis? Hey, I know what you’re feeling. I’ve been where you are right now. You might be young, maybe in your teens. You might be older, with children and grandchildren. Maybe it’s your child who’s been diagnosed with UC. Regardless of where you’re at we’ve all been there, all of us with UC, and it’s OK to be scared, shocked, indifferent or whatever you’re feeling right now. It’s all valid.
I would like to tell you a bit about my story from where I started my UC journey to where I am today because I want to share with you how it’s possible to have an amazing life with this chronic illness.
I was diagnosed when in December of 2008 when I was 15 years old. When I got diagnosed I felt, well, nothing, really. I felt kind of indifferent. I had gone to my school nurse with pain in my lower left side and I got an emergency appointment with the doctor since they suspected it might be the appendix. When that was quickly ruled out, the doctor kept asking me questions.
One question required an answer I had never spoken out loud before.
“When you go to the bathroom, is there blood when you poop?”
I answered yes.
Then, he asked, “How often?”
“Every single time.”
Then, he asked, “For how long?”
“For about 10 months.”
I still remember his reaction before he managed to get his face under control: his eyes widened in shock.
I was sent to the hospital in a bigger city nearby; my mom drove me there. They did some tests, and my mom and I stayed the night. Results from the blood tests showed my red blood cell count was about half of what you’re supposed to have, and the nurses were amazed I was even standing. They said they had never seen anyone walk around with such a low blood cell count. At this point, I was going to the bathroom 20+ times a day. At one point in time I had pooped my pants and washed myself off in a middle school bathroom, then took a 25-minute bus trip home.
I know it sounds amazing that I wasn’t understanding something was very, very off, but I really didn’t. It had all become so normal at this point.
I was diagnosed within a few days of first going to the doctor, got some basic information about the illness and was then sent home with a doctor’s appointment scheduled a few days later. I was still indifferent. I remember saying to my mom, “Hey, so what if I need to take a few pills a day if that means I stay well for the rest of my life?” My mom took it way harder than I did.
A few days after that, I completely crashed and ended up spending three weeks in a hospital bed not being able to eat or drink. I was in constant excruciating pain, and I was too weak to properly walk the maybe 10 steps needed to get from my bed to the bathroom. I got out of the hospital the day before Christmas, and the coming months were a long, hard struggle to get, literally, back on my feet. I couldn’t stand up while showering because it was too exhausting. My mood swings were horrible because of the high doses of cortisone I was taking: I once had a meltdown because my mom asked me what kind of juice I’d prefer. If you’ve been there, you know what it’s like. It was hard. It took me another eight months to fully recover from my three-week hospital stay.
The seven years since then have been filled with ups and downs. I’ve tried different medicines, been away from school for months at a time, been screaming from pain. I’ve matured in ways you only do if you’re combating a chronic illness.
I am a hopeless optimist. I honestly believe things will turn out well in the end. Ulcerative colitis is a part of me, and I’m doing the best I can. I can honestly tell you that living a meaningful life is possible. Right now, I have a full-time job in broadband customer support. I play roller derby, a full contact sport on roller skates. I am active in different volunteer organizations. I play video games, I’m in a book club and I am writing a science fiction novel in my spare time. I go to events and pop culture conventions and music festivals. I have friends I can talk to and who appreciate me for who I am, regardless of me having UC.
I do this even with my recent switch to the medicine Humira, a bi-weekly shot that, even with numbing salve, makes me scream in pain when I take it. (And I have a high pain threshold) I do this even with the possibility of having to get a stoma in the near future. I do this despite doses of cortisone, despite eczema, despite normal colds knocking me out completely because of my lowered immune system. You can also do this.
But you know what? It’s OK even if you don’t do all of this, or half of this, or even any of this. If you got out of bed today: congratulations! You’ve done great today. If you didn’t make it out of bed today, that is also fine. You’re doing great for hanging in there, and tomorrow is another day.