I had my bags packed a week before entering the hospital, learning from the late summer’s hospitalization that sometimes these things get worse fast. Very fast. I had the same “If you don’t get better by ____day, you have to go to the hospital” scenario. I obeyed this time, learning from the early summer’s hospitalization that I was cutting it too close. I wrote drafts for my Etsy shop “vacation message.” Vacation. Right. No surgery was even scheduled but, call it intuition, I knew it was going to happen. I read and re-read the surgery and post-surgery descriptions, as if the act of knowing ahead of time could achieve some level of dealing-with-ahead-of-time. I attempted to reassure myself that my pain tolerance is high, but realized that all this means is that it takes me a lot longer than the average person to cry/break–the pain is still the same. I tried to compose light FYI emails “I might be out of commission for…a while, because there’s a good chance I’m going to have my colon ripped out. So, how are you??”

Riding in the car to the hospital I was thinking, the next time I am in a car, I’m going to be so…different, changed. Well, that’s always true after these hospitalizations. I tried to imagine what it would feel like to be missing an entire organ, to be “missing” my chronic disease, only to be temporarily replaced by other pains and difficulties. I got to bypass the ER entirely, a room made ready for me by my GI and PCP. “Good to see you…except, not,” I said to my GI’s PA-C. “Well, here we are,” I said to my GI. “We’ve been waiting for you…you know the drill for the first couple of days.” Oh, do I ever.

I will consume only clear liquids and probably get migraines because of it. I will be put on a ton more steroids. I will laugh inside my head at the few choices presented to me: orange or yellow jell-o? apple juice or cranberry? blood from the right arm or left? I will hear the sound of the wheels that means it’s check-your-vitals time; I will stick out my finger for the oxygen-checking and my arm for the blood pressure cuff, I will open my mouth for the thermometer all without opening my eyes. I will have the IV nurses look at my arms and shake their heads and say, “Your veins are gone. You know this is going to hurt a lot, right?” I know. An orderly or somebody in radiology will say, “You’re too young to be this sick,” and rather than say, “Apparently I’m not,” or “Really? Because I used to visit someone on the pediatric cancer floor,” I will just say, I know. My PCP will reiterate that I am “one of those rare cases” that doesn’t respond to steroids. I know. “We were talking about you…all these hospitalizations…” I know. A few days will go by and I will be told, “you aren’t getting any better.” I know.

On the day I was supposed to have an office consultation with a colorectal surgeon for a surgery that would happen “some time in January,” a different surgeon, the original’s partner, and his team come to my hospital room. He starts explaining the surgeries, the temporary ostomy bag and I say that I am pretty educated about all of it already. He says, “Do you want to get in there then?” I smile and say, “I’m pretty good with my hands.” It would be 3 surgeries instead of 2, since I didn’t respond enough to steroids, a year-long process rather than 6 months. “If we can get an operating room tomorrow, would you…? “Yes.” No hesitation. The “some time in January” plan is no longer the plan. “Are you ready for this?” “It’s not possible to be ready for this.” And it doesn’t really matter one way or the other. I am scheduled for surgery.

Later my GI comes in, to a stone-faced me. I shrug my shoulders and throw up my hands as if to say again, “Well, here we are,” but I say nothing at all. He says, “I know.”

It was always going to come down to this. I recall first being diagnosed, not far from this hospital. And later looking up ulcerative colitis online, a disease completely foreign to me at that time but which had already taken hold of my body. The statistic that 40% of cases would eventually require surgery. Require. A last resort when all else has failed. I cried and cried then because I had a feeling I’d be in that 40%, a case of pessimism more than intuition.

They tell me to take off my nail polish. “Are you serious?” “That’s how they check your oxygen levels.” I try to get out of it–probably the only thing I try to get out of while in the hospital! That is the one good thing left on me, that dead mass of cells at the end of each finger, perfectly painted blood-red, touched up on a daily basis in a pathetic attempt to be proud of something, anything, on this disintegrating body. My grandma brings me an arrangement of hemlock from the infamous hemlock tree. Bend, do not break. Bend, do not break. Know and feel the difference between giving up and giving in. I am giving in. I read cards from my mom’s class, “I am sorry your colon hurts,” “ps-your mom is a great teacher,” “here is Santa and his elf doing the hip-hop.”

My crafty community here put together a big basket of handmade and fun things for me, one of which was the Spill Your Guts! journal I wanted. If that isn’t perfect for this occasion, I don’t know what is. The night before surgery, I make a to-do list in it for my life, thinking about everything I haven’t been able to do, that I want to do.

I feel oddly at ease that night. She has no memory, nor fear, nor hope/Beyond the grass and shadows at her feet. (Hart Crane) I go into it expecting…nothing. I sign official papers that if I cared to read them probably say that I go into this saying exactly that, knowing that I may never wake up from it. What did I read in Anna Karenina just a week before? “Live in the needs of the day, that is, find forgetfulness.” What would I read in a Camus essay a month later? “What wells up in me is not the hope of better days but a serene and primitive indifference to everything and to myself.” I notice a trend in what I have been reading since I moved back to Pittsburgh, some books I sought out and some happened upon by accident, but many that visit the idea of courage, and try to define it, as well as the antithetical ideas of hope and despair (literally, without hope). All the quotes I write down point to the same ideas.

“The greatest test of courage is the readiness to make the greatest sacrifice, the sacrifice of one’s life.” -Paul Tillich
“No courage is so great as that which is born of utter desperation.” -Seneca
“The believer perceives and understands, humanly speaking, his destruction (in what has befallen him and in what he has ventured), but he believes. -Kierkegaard
“The acceptance of despair is in itself faith, and on the boundary line of the courage to be. In this situation the meaning of life is reduced to despair about the meaning of life. But as long as this despair is an act of life, it is positive in its negativity.” -Tillich
“Courage is not the absence of despair; it is rather, the capacity to move ahead in spite of despair.” -Rollo May
“The great courage is still to gaze as squarely at the light as at death.” -Camus
“One manages to get over everything, born as one is to a burrowing and battling existence; one always returns once again to the light, one always lives again one’s golden hour of victory–and the one stands as one was born, unbreakable, tense, ready for something more difficult, for something more distant, like a bow stretched but the tauter by every strain.” -Nietzsche

Rest assured, I do eventually “lose it.” I am not that strong. 😉 I cried like a baby when I was on the gurney, being wheeled to pre-op. I cried like a baby in pre-op when they were inserting the nerve block in my back, not because it hurt (it didn’t) but because it was all happening. And because like every other hospitalization, I had bonded with the nurses and doctors, I was still able to create and crochet a little, because I could make people laugh, because I could impress people with the book and my “work,” and yet at the same time, I could be in such bad shape and so precariously holding on. That this year could be so good and so bad.

As was expected, the post-surgery days were some of the worst, most painful days of my entire life. I knew that no matter how much pain I had experienced over the years, surgery would be a whole other beast. Like I said, I had read about colectomy (the removing of the colon) beforehand, from medical websites and from friends who had been through it–I knew it was going to be…awful. But I wanted to go into it knowing the nitty gritty, to not be spared the gruesome details, to not be shocked by the awfulness. When I was talking to one friend whose brother experienced complications, I asked point blank, “How many times did he want to or try to kill himself?” Her answer was something along the lines of, “he had to be restrained.” I forwarded these emails to my parents, verbally adding, “I’m probably going to want to kill myself at times–I want you to know why.”

What was the pain like? Like a hundred mallets and knives dancing around in there. Like being karate-chopped in the abdomen over and over. But there were so many pains at once: the surgery pain because I have literally been sliced and diced, other organs moved around, the migraine pain from not eating, the back pain from lying flat so much, the pain from torn unused muscles. Burning pain and disgusting bruises from twice-daily Heparin shots. Again, the choices, “Stomach or thigh? Left or right?” Felt simultaneously, it is really beyond words. That’s all I could think of when trying to describe it: this is brutal beyond words. I guess that’s why they use the 1-10 pain rating system.

I am amazed, grateful, shocked, annoyed and depressed at the fact that the human body can get through something like this. I am thankful that I am not allergic to morphine after all. It took about 2 minutes to understand morphine addiction, to experience both a numbing of the pain and a numbing of the mind, a combination that is so comforting. Because even with the nerve block, the “minimally invasive” laparoscopic surgical techniques (OMG, little cameras swimming around in there!) and the ability to press my morphine button every 8 minutes, it was all still so horrible.

The surgeon I was originally supposed to have a consult with comes by the day after my surgery, along with my surgeon and his assisting residents. I think it was the day after? I was miserable and immobile, so it must have been but those days blur and blend. In my drugged-up haze, I remember him asking how I was doing. I can’t remember what I answered–it’s possible I feebly smiled and jokingly said, “fantastic.” I do know, however, that he said with a ridiculously big smile, “You’re beautiful–you’re a con.” Ha! Compliments are nice in the hospital even when they’re lies. There are times when how I look is on course with how I feel, and other times when I look okay or even “good” but feel like hell. I’m not sure which I prefer. A few days later I remember laughing to myself at that being the first time I had ever been called “a con.” And under what circumstances…

There are so many tubes, something I was warned about but something that is nonetheless, quite shocking to wake up to. The IVs, the oxygen tubes coming from your nose, the catheter. Gosh, my first catheter. For those first 12 hours or so afterwards, there is no need to get up, as everything is either being pumped into you or drained out of you that needs to be. But they make you walk almost immediately because it “speeds up recovery.” Well, I cried like a baby, but this time down the hallway, clutching my mom’s arm and my IV pole. What’s the number for “I want to die”? Is that 10? I think I experienced 10, then. For the first 2 days, I didn’t consume anything. For over 80 hours, I was allowed to ingest 3 glasses of water total. Total. They give you this tiny sponge on a stick. The rationing of one glass of water over 24 hours almost drove me over the edge. That tiny sponge on a stick now sits inside a little vase above my desk, a reminder.

Once I made it to the 4th day after surgery, I could start to feel improvement. Though everything still hurt like hell. The nurses who remembered me the 1st day were wide-eyed at me “doing laps” around the hallways: “I saw you that first day…oh my God. Look at you now!” I still had to push the morphine once, twice, three times before getting out of bed but it hurt a teeny tiny bit less than the day before. I didn’t have to be on oxygen. I started to eat food again, soft food, but food, food that I used my teeth to chew. I didn’t have to watch my pee drain into a container attached to me. In other words, I felt more like a human.

Living with this ostomy bag, though temporary, is…interesting. It is what it is and it beats being dead, I guess. In the hospital, I couldn’t look at it at first because I was so worried I would freak out. One time, post-surgery, I lay back on the bed too quickly and I screamed out in such pain, cried and cried and realized how much more painful it was to cry now. Using those abdominal muscles, clenching, hyperventilating, gagging. I cannot cry I cannot cry I cannot cry. And I didn’t after that. And I very logically and practically promised myself that I could not have a breakdown about any of this till I was healed enough that crying didn’t hurt so much. I put it off till last night, almost a full month.

Recovery felt slow, not being able to sit up on your own for the first week or so, not being able to have 1 minute without pain, taking multiple naps a day. I spent 12 days in the hospital, discharged 4 days before Christmas. I attended all Christmas Eve festivities…somehow. I am off painkillers, almost pain-free, sitting up on my own for weeks now, down to 1 nap a day and up to 25 minutes on the exercise bike a day. Today is my 1-month surgery anniversary. It is so strange to no longer have to run to the bathroom, to sleep through the night, to eat corn, to envision a time, not so far off, when I will no longer have to take steroids, and a time that is still very far off, when I will be through 2 more grueling surgeries and recoveries. I am trying not to think about the fact that I have to go through a lot of the above…again. I am instead trying to think about when I will, 7+ years post-diagnosis, a bow definitely stretched but hopefully tauter, be able to do,…anything.