Posted 7/30/2017 2:15 AM (GMT 0)
Hi forum. I wrote this for a writing assignment. I thought some might appreciate it here. I don't mean for it to scare anyone who is newly diagnosed. I've had UC for over 12 years now and, unless I'm flaring, it's really not a big deal. It was just very cathartic to write this because, for me, writing has always been a helpful way to process stuff.
Hi. It’s you. I’m 42 now. Things are good over here, so please know, despite what I’m about to tell you, that you’ll come out the other side in pretty good shape.
Remember that thing Dad was diagnosed with recently? Ulcerative Colitis. You used to see those commercials about it when you were a kid. They were just words in a commercial. But those two words are written into your genes, tucked in among your green eyes and long thumbs. Those words are about to come to life.
It’ll start out slow. You won’t really understand the apologetic way the doctor gives you the diagnosis because the medication will work at first and it won’t seem like a big deal. Daily medication for life: manageable, you’ll think. Over time, you’ll start to see some signs that the medication is becoming less effective: some mucus, some blood, increased frequency, urgency… You won’t know yet that these warnings must be heeded. The resulting flare-up will change you and teach you things you never wanted to learn.
The next two and a half months will consist of your first real exposure to what it’s like to be a sick person. You’ll have a systemic battle raging in a 7-foot tube of tissue inside your abdomen. It’ll scare you more than you’ve ever been scared before and you won’t be able to get away from it. Every morning, the second you stir, your body will suddenly and urgently need to eject the contents of your colon, a lot of which will be blood. When I say urgent, I mean you’ll have about four seconds to get yourself onto the toilet. That innate safety net that keeps people from crapting themselves will vanish. It will never stop being alarming to see a toilet bowl filled with blood and you’ll repeatedly have to behold that sight alone.
You will learn about pain. It will be the kind of sickening pain that makes you want to vomit or pass out and it doesn’t care if you’re tired or weak or just not ready. It is blunt and callous and it will invade you. It will come in exhausting rounds, like a brawl with a bully. It will become a familiar character that lurks and bides its time when you’re healthy. You can get some distance from this pain by quantifying it. Rate it out of ten, ten being impossible to bear. I’ve never had to quantify it as a ten for very long, but it likes to hang out at nine. Give it descriptors; sometimes it’s sparkly and sometimes it’s hot. This will give you some room to move, a way to help get your head around it. Watching it from a less defensive perspective will help you feel less consumed by it. You’ll learn not to resist it so much, to give yourself over to it. Over the past decade, it has lost some of its power. But, honestly, I’m still very afraid of it. Hang on to counters and towel racks and doorknobs and remember that you can always lie in the bathtub as a last line of defense. It always passes eventually.
You’ll learn how it feels to exist as a sick person. You’ll move more slowly and gently when you’re ill. And you’ll realize that there are sick people everywhere who are also dragging themselves along in a massive effort to keep up with life. This illness will give you empathy and an understanding of people who have lost the luxury of feeling like they live in a safe vessel. You’ll recognize each other. On the other hand, you’ll have to manage the fact that most people don’t understand what it’s like, physically or emotionally. They’ll assume you played a role in getting sick and make silly suggestions. Keep it moving.
This disease will drastically change your relationship with food. You will be so scared by your first few big flare-ups that you’ll go more than two years without eating any wheat, grains, sugar, or dairy. You’ll become convinced that you can control this with your diet. Then you’ll learn that you can’t. You would not believe the amount of information that will cross your mind before eating any item of food. The internal noise can be paralyzing in a grocery store or restaurant. Aside from organic lettuce, organic radishes, organic cucumbers, organic herbs, and organic sauerkraut, I can’t think of a single food that doesn’t cause brain chatter to some extent. Everything I put in my mouth happens after some mental negotiation, particularly when I’m sick.
You will become a vigilant watcher of symptoms that change daily, without any predictable patterns: fatigue, constipation, diarrhea, pencil-poops, mucus, blood, gas, bloating, cramping, tenesmus, hemorrhoids, urgency, frequency, waking up to go to the bathroom at night, left-sided pain, noisy guts, and geographic tongue. Two or three symptoms at any one time are probably fine. Any more than that means you may be headed for trouble and you need to try as hard as you can to pull yourself out of it. Blood and nighttime poos must be drowned in medication. Many times, you’ll be able to get back on track. Sometimes you won’t, despite your best efforts.
You will learn that doctors don’t have many answers and that you have to learn to trust what you think is best. So far, at the 11-year mark, we’ve managed to avoid any biologics or immuno-modulators and I intend to keep it that way. You’ll insert liquid medication into your ass thousands of times and you’ll manage this while dating (spoiler alert!) Prednisone is scary and weird but it works and you’ll recover from its side effects over time. Even the bone loss.
I don’t know if there will ever be a cure, but options for medications constantly evolve and I’m optimistic about the research happening. You’ll be fine. Everyone has something. Try not to be apologetic when you’re taking care of yourself.
You got this.
xo