Last Monday meant exams were over and vacation could begin. Well, after a little doctor’s appointment. The university’s doctor got my blood work back and suggested I see my family doctor to get an appointment with a gastroenterologist for a colonoscopy. I’ve been having stomach problems since I started taking medicine in the summer, and lately, there seemed to be a constant dull pain in my stomach. As much as a colonoscopy is gross, I was all for it, because I wanted to get better, darnit! We went to see the family doctor and he said he would see about getting me a referral to a gastro doctor, and in the meantime, prescribed me Prevacid to help soothe my stomach and hopefully repair any damage from an ulcer or something.
Tuesday meant another blood test, my most hated of all doctor related thingies. Went to the lab with my dad, waited an awful long time (if you’re doing blood work, don’t do it in the morning if at all possible – way too busy then), which is the hardest part for me. Finally got in to see the blood doctor lady and I requested I lie down, since these kind of things freak me out. “No wonder,” she said when she saw my veins — some of the thinnest, wiriest ones she’s seen. It took her three pokes to get anything. I asked if I’d be able to eat afterwards, since I had to fast for twelve hours before giving blood, and she said after what I’d been through, I was one of the most deserving people to get something to eat. Finally done and over with, I had to give a urine sample, which I can never do on demand, so I ended up taking the bottle home and sending my dad back with it later.
I’d also that day taken my first upped dose of Prozac, 1 1/2 up to 2 teaspoons. Took the Prevacid at night, two meltable tablets that didn’t taste all that bad, but it took a long time for me to get psyched up to take them. Was feeling kinda crappy, so decided to watch Anne of Green Gables with my mom in her room with her nice heated blanket. While we were watching, I suddenly felt like passing out and had to go to the bathroom to throw up and poop up. Gross when they happen at the same time. We were concerned, because this wasn’t supposed to be a side effect of the Prevacid. Calmed down a bit, went back to watching TV, but continued to have constant dull pains with occasional sharp, shooting pains down my chest to my crotch.
My dad came upstairs to sleep, but I decided I wanted to stay in his bed, so he said he’d sleep downstairs. I felt a little bad about it, but I just really didn’t want to be alone. This had all started around 9:00 pm, and by 4:00 am, it was still the same. My mom and I contemplated for a few hours what we should do. Should we go to the hospital? Is it just gas? It didn’t seem like it; this was like no other pain I’d had before. It seemed to be more on the right side, and we thought that could be something to do with the appendix, so we got my laptop and started looking stuff up. We finally decided to be on the safe side and go to the emergency room. I didn’t want to call an ambulance because then they’d come with their sirens and the fire trucks and all that, even though it meant we would be seen sooner. I didn’t feel like I needed to be taken out in a stretcher. We woke up my dad and told him what was up, so over to the hospital we drove.
Emergency room and waiting rooms
My mom and I waited in emergency while dad parked the car. Didn’t seem like a very “emergency” place to me; there were just a couple of ladies behind desks and on phones and not talking to us. Eventually, we were seen, and the lady asked all kinds of questions, and after a long while of getting up and sitting in different chairs and seeing different people, I was off to a room. A waiting room? There were four beds, people coming and going in the others. I laid down, and my parents sat with me. Person after person came in asking the same questions. I don’t remember much else that happened there, but I think my mom went home, and my dad said he would call her as soon as we found out anything.
Urine samples, x-rays, CT scans
After I had given a urine sample (which took awhile again), I got to have a drink — finally. But it was actually x-ray dye: two seemingly bottomless cups of warm water that tasted kind of like pool water, or water from somewhere gross that you wouldn’t want to drink. It was to make my insides glow or whatever for when they did the x-rays. I remember doing some x-rays before the water, and that as she was taking the x-rays, I had a shooting pain. The dye was for the CT Scan I guess, and I had to drink another half cup of dye before going in. I had my eyes closed the whole time because I thought it was supposed to be scary and claustrophobic-y, but it wasn’t; I guess maybe that’s an MRI. All the tests weren’t too bad, except I was in constant pain during all of them, and there was lots of waiting out in the hallways in my bed in between.
My hospital room
I guess when they were finally all done the tests, I got to my real room. I don’t remember much about that, but I must have been there for awhile, because I’d had lots of people in to see me and ask questions. I also had two ladies come in and one explained about the anaesthetic and another about an ostomy bag thing that I may have to have to carry my stool in, since I wouldn’t be able to “go” normally after surgery. They hoped that it wouldn’t come to that, but they wanted to prepare me for the possibility. There was still a lot the doctors didn’t know at this point, and they would have to make a lot of decisions during the surgery about what they would have to do.
Two other ladies came in just before 4:00 — which was when my surgery was scheduled for (I think that was four in the afternoon, but… I really have no idea) — and asked if they could test these temperature taking things on me, since I had a fever. I could’ve said no, but I figured I had nothing better to do while waiting for surgery, so I agreed. If I can help with medical research and testing, I’m all for it. They tested one side of my mouth, then the other side, then the middle for three minutes. They said the tests were to compare the accuracy of the new quick tests to a more accurate old mercury thermometer test.
Anyway, it turned out I had/have (?) a perforation in my bowel, so they had to remove a piece of it; I think the doctor said it was about six inches, which to me, sounds like a lot, but I think isn’t really. I remember going into the room for the anaesthetic and immediately thinking how much it looked like the “Maxwell’s Silver Hammer” scene in the Sgt. Pepper’s movie; the walls were the exact same colour, and I dunno, maybe there were some posters on the wall. I remember them moving me onto an uncomfortable table, and my arms were spread out, and I was in Jesus pose — which was a little alarming. They put an oxygen mask on my face, which I guess then turned into the anaesthetic, because I don’t remember anything after that. I think they had a big mask at first, but then they had to change it for a little one.
When I woke up, I think I was in the recovery room. Maybe I woke up in the elevator; I’m not sure. The nurses in the recovery room were really nice. I can’t remember exactly why I thought that, but my parents assure me I’m right. They gave me a pain pump, which is a button I could press whenever I felt pain and it would give me a shot of morphine, but it was controlled so that I would only get a little bit every ten minutes or so. I’m told I pressed it eleven times and only got three doses, which was partly because I didn’t know if it was working, and partly because I was in pain and really didn’t want to be.
At the time, I felt like this was the most painful part. I don’t remember the pain much any more, but I remember thinking it was really bad. I also remember thinking that I didn’t want to leave the recovery room, but I don’t know why. I think when I woke up, I had all these extra tubes sticking out of me. There was stuff in my neck to use to give me fluids as well as to take blood so they wouldn’t have to stick me with needles all the time. Then there was a thing in my nose that I still don’t understand, but apparently it took out bile. And then the catheter, which I thought was for the butt, but it’s is actually a tube in your pee-pee (or your girl pee-pee), and your pee goes through it and into a little plastic bag, and you are kind of peeing all the time without knowing it. And then there were bandages and stick things in my arms for/from who knows what. But I wasn’t really very aware of this.
I couldn’t talk much, because I was still out of it, and I guess the thing down my nose/throat didn’t really help. I remember saying one word things like “paaain” and “bag?”. I was told there was no ostomy bag, and surgery went really well. I don’t know how well this registered in my brain, because I think I asked a few times. I’ve forgotten most of what happened there, but I know I was lucid at the time. I don’t think I had my eyes open much, but I don’t know why. Maybe I was trying to sleep.
Then off to my real room, which is where I spent the next terribly boring eight (?) days.
It’s nearly three years later (Sep. 28, 2012), and I never wrote about those eight days in the hospital. I did plan on it, but while it was still fresh in my mind, I didn’t want to remember it, didn’t want to do anything in general, and probably didn’t remember most of it. Let’s see what I can remember now.
The nurses were lovely. They always took awhile to respond when I pressed the call button, but they were lovely.
There was one nurse I felt particularly bad for when I woke up one morning and realized my bed was a mess due to getting my period and not having any underwear under those lovely hospital gowns. Pretty embarrassing for me, but I guess they’re used to that. I still felt terrible that she had to clean it up. She gave me an industrial strength pad to wear.
Nurses seemed to constantly be coming in to check blood pressure. Every morning, early, like 7:00, I think they would come in to take blood samples from the tube in my neck. Ooh, I can still remember that smell — the smell that just seemed to come from within my own body. Maybe it did. It is a strange sensation. I read someone once describe it as feeling as if you just ate a mint; I think that’s a good description, but it doesn’t get at the feeling that it seems like the mint is in your entire body.
I can remember a nurse coming into my room late at night to take my blood pressure. She asked what high school I went to, and I told her. She said something about my school’s bad reputation. I said that my friend Heather, who used to go to a different school, said our school was full of druggies, sluts, and nerds. The nurse made a comment that she thought there weren’t any nerds there. She was correct; Heather’s quote was actually druggies, sluts, and losers. I think I also talked to her about my current school situation, and how I used to be smart, but not any more, and I’m pretty sure I cried. (I was, of course, still smart, but Crohn’s kind of messed that all up, but I didn’t understand that at that point.)
So that tube I had up my nose, somehow I had understood that my poop was going out this tube. When the time came for a nurse to take the tube out, I asked her, “How will I poop?” or something to that effect. I think she was confused by my question, so I must have explained to her that I thought the poop went out the tube. She said, “There’s no such thing as a stupid question”. My silly little brother then asked, “Can you get AIDs from a pool table?” and I think she explained how you could (ie. rubbing an open cut on your genitals on a pool table that had blood from someone with AIDs on it… or something). In retrospect, my confusion was funny, but at the time, I felt rather stupid.
Christmas and family
I was in the hospital during Christmas. My family on my dad’s side always gets together on Christmas Eve at my grandma and papa’s house. I’m not sure if they even did that that year. That year was the first year I was not supposed to get presents from the aunts and uncles, because I was too old now, but with me being sick, I got some any way. My parents and brother came over on Christmas Eve or Christmas morning with our presents from home. I had previously decided I was too old for presents from my parents too, and so I had just asked for money. I think that was the plan, until I ended up in the hospital, so my dad went out and bought me an iPod classic. Pretty good gift for someone in the hospital with nothing to do (though it did crash/freeze the first night I got it, which was unfortunate, but I always get a little pleasure when I see Apple products stop working). I think I cried when I opened it because I didn’t want my parents to spend so much money and I didn’t really want an iPod and if I did, I wanted a green one, and I was just crazy emotional in general.
My mom had bought me some cute Smurf pajama bottoms, but they wouldn’t fit because my stomach was so distended.
When I was still in school, I had secretly ordered some funny t-shirts for my parents and brother online and had them shipped to my residence at university. I hid the shirts in empty cardboard pancake boxes and hid them in my underwear drawer at home. After the first night at the hospital, my mom had gone in my room at home to get some things for me, and she found the boxes. She later told me she was mad at me for stockpiling food in my room, but she felt bad for being mad at me since I was in the hospital. She must have peeked in the boxes and realized what it was, so she wasn’t mad anymore. One night, when it was just my mom and me in my room, I told her I had a secret, and I thought she might already know what it was (because I knew she would have gone in my underwear drawer). I think she was confused and worried — I don’t remember what she thought the secret was. Anyway, she confirmed she knew about the boxes, and everything worked out.
Also while I was in the hospital, my mom confided to me that she had found a pill on the bathroom floor at home, and she was worried my brother was taking drugs. She knew it wasn’t mine, because I can’t swallow pills. Now, my brother and I are both totally straight: no drugs, no smoking, no alcohol, no parties, nothing like that. My mom said there was also a chance it was her own pill that she thought had fallen down her shirt and then fell out later in the bathroom. I assured her there was no way my brother would do something like that, and I guess my mom later realized it was in fact one of her pills. I don’t think my parents ever confronted my brother about it, but months later, I told him about it, and he was a bit offended, but we all knew he would never do something like that, so it was kind of funny.
I think my first hospital room was a two-person room, but the other bed was empty most of the time I was in there. Eventually, another woman was put into the other bed. I don’t remember what was wrong with her, but I think she was older, but not like white hair old. One day, when I was allowed to eat non-solid foods, I was delivered my meal and she was given one too, which I thought was strange because she was supposed to have surgery that day. She ate a little bit of the jello, which she wasn’t supposed to (but she wasn’t supposed to have been given food in the first place). I think there was talk of pumping her stomach before the surgery. I don’t know what her whole story was. Later, I think her daughter or another person with her was talking to a doctor out in the hall, and I think they said something about cancer, and don’t tell her she has it, or something. All very not nice stuff.
I don’t remember when I was allowed to eat what. At first, I was allowed nothing. Unless you count the bag on the IV. I think it was called TPN. I remember thinking I wished I could have that all the time so I wouldn’t ever have to eat anything again.
Eventually, I was allowed to slow sip water and eat ice chunks, then clear non-solids, like jello and soup, then finally solid foods. I was never a fan of jello, and I’m especially not any more. I think all I could have was like orange or yellow or green jello, maybe. I forget which was the worst kind, probably orange. And I don’t eat soup any way, and this stuff was really more like plain hot water. I didn’t eat any of that. I can remember my grandma being there one time and wanting me to drink the soup. I got my dad to bring some fruit punch from home, which tasted terrible because I had previously been mixing it with my liquid iron to make it easier to take, so that sort of ruined fruit punch for me. I think just before I was allowed solid food, I managed to get my dad to bring me baby cookies so I could lick them. When I was finally allowed solid food, my dad brought some buttered toast with jam from the cafeteria. I cried. It was so good.
There was another time when I was in the hospital with my dad and I cried, but I was crying from happiness because now we knew what was wrong with me and I was going to get better.
At one point towards the end of my stay, my dad took me down to the cafeteria. I can’t remember if I went in a wheelchair, or maybe I was just dragging my IV cart with me. Anyway, after we got there, I had to go right back upstairs, because I was feeling super anxious. Towards the end of the my stay, I did manage to go down the cafeteria and sit and eat there once.
When I finally got to eat solid food, they would give you a menu and you would order food for your next meal. Your first meal was whatever the person who was last in that bed had ordered. The menu was just a piece of paper and you would check off things in certain categories I think, and then hand in the menu with your tray. It was quite nice that you could choose between like skim milk or 1%, 2%, etc, and white bread or whole wheat.
Going to the bathroom
Going to the bathroom was always a chore, because first I had to unplug the IV cart, the cord of which was plugged in behind my bed, then I had to lug the cart in the room with me and try to close the door. At one point, they switched my IV cart with another one because I didn’t need the TPN anymore, and then I was stuck with a very loud squeaky one. I always felt bad about getting up in the middle of the night and banging the cart into my roommate’s bed, but the room was small and there wasn’t much I could do about it.
I can remember one time not quite making it onto the bowl in time, so I had to wipe up the floor.
I must have been going a lot, because my hands were so dry from washing them so much.
For the first few days, I think there was some sort of bowl that I was supposed to go in so I guess they could monitor my stool to make sure there wasn’t anything wrong with it.
There was some liquid pain medication that came in a little cup. It tasted terrible. I don’t remember why I had to take it, but I did a few times. Maybe for a fever. Yes, I can remember having a fever at one point and the nurse having me sit up on a chair and putting a damp cloth on my head.
There were a few times I was given some pills to take, but I would have to send them back and wait a long time for the nurses to find a liquid form of the same thing.
I think I got to go a few days without taking my Prozac from home, which I certainly liked because it tasted terrible. But it’s not smart to go right off it cold turkey, so my parents brought it from home and I had to start taking it again. Yuck, I can still remember the sticky box I had all my medicine supplies in.
It was mostly very boring sitting in my bed. My parents had brought my laptop for me, but there was no wireless internet. I think I tried to play The Sims once, but it was very laggy and my laptop overheated. I think I considered coding something, but I gave up quickly. After I got home, I put a bunch of old DOS games on my laptop so if I ever had to stay at the hospital again, I could play Warcraft or Wolfenstein.
My aunt and grandma brought me goody bags with things like moisturizer and High School Musical chapstick and hand sanitizer and word searches and crossword puzzles. I did quite a few of those.
I was supposed to make sure to move my legs a lot so I wouldn’t get a blood clot or something. The first night, I remember I slept on my back and didn’t move at all, and in the morning, my legs were so stiff. I don’t think I did the exercises nearly as much as I was supposed to, but luckily, it turned out all right.
I was also encouraged to take my IV cart and walk around the hospital wing. At first, I could only go a few steps down the hall, but by the end, I could walk all the way around the wing. There was a nice sitting room with a TV and a Christmas tree where you could see all the city down the mountain. I can remember sitting in one of the TV rooms with my parents and watching My Name is Earl. I can also remember watching the first season of Survivor marathon on the tiny bad quality TV in my room.
When I finally had enough strength, I was allowed to shower in a big old shower room. I think there was a chair I could sit on. It felt so nice to have clean hair. Before that, they would bring a water basin and cloth for you to wash on your bed. I can’t remember if any of the nurses washed me, but I think they probably asked if I needed help, but I was determined to be independent, so I washed myself most of the time. I remember the first time I washed myself, there was bright pink stuff on my back. I’m guessing it had something to do with the surgery, but I have no idea.
Taking out the catheter, staples, and tubes
I don’t remember when, but eventually, a nurse had to take out my catheter. I can’t remember if it hurt or not. I think she said it would feel like a balloon deflating inside me or something?
The day I was to leave, one of the last things they had to take out were my staples. Yes, literal staples in my stomach. I think it was something like twenty-one staples. I’m trying to count from the marks on my stomach, but the scar has thankfully faded so much that I can’t make it out. Anyway, I think it was a younger nurse who took out my staples and it was her first time, so she was excited. Most of the staples came out pretty easily, but a couple were quite painful. I really liked having her as a nurse. She was very eager to help.
I think the very last thing to do was take the neck tube out. I was very nervous about this because the guy who did it said you could end up with air bubbles in your veins that could go to your brain or something. He told me to “bear down” to ensure this didn’t happen, but I still worried for weeks after that I did it wrong and I was going to die.
Back to school… and back to the hospital
Shortly after I came home, it was time for my second semester back at school. After about a week, something happened that made me want to come home and go back to the hospital. I think I had an alarming amount of blood in my stool, and perhaps some stomach pains. Anyway, I came home and went back to the hospital, but this time, I was in a couple of rooms with three or five other people. I think I was told that my bowels had stopped working or frozen or something. I can remember being told this was something that commonly happened after bowel resections, but usually it happened much sooner than it did to me.
After the temporary waiting rooms, I went back up to my old hospital wing, but this time in a room with four beds. When one of the cleaning staff came in to clean the room, she (he? I can’t remember) asked what I was doing back there. I said I was pretty sure I was fine, but I was here just to make sure I was indeed fine. I was happy to be remembered.
Anyway, I was back out again in a couple of days when they were sure everything was fine.