My Anus Horribilis

After high school, I enrolled in a computer science co-op program at university, and I began my studies in September 2008. I was eighteen years old and perfectly healthy. I was a good student in high school, and I had three scholarships going into university.

First year: It begins (September 2008 – April 2009)

In my first year, I lived in a single room in the oldest residence on campus, built in 1969. For most students in that residence, that meant sharing a bathroom with the six other people of the same gender on your floor, except that my floor had four girls and eight guys, so us girls decided we would let the boys use our bathroom too, so it was more like sharing a bathroom with twelve people.

When you walked into the girls’ bathroom, there was one stall with a toilet ahead of you. To your right, there was a large mirror and two sinks, and then a curtain that separated the small shower and bath area from the rest of the room. If I recall correctly, the shower and bath each had another curtain separating them from the bathing area. And then there was a metal board that separated the girls’ bathroom from the boys’ bathroom. The upside of living in DeCew was that we didn’t have to clean our own bathrooms.

Due to DeCew being the oldest residence, it had no elevators. I was lucky enough to get a room on the top floor (which was called the fourth floor, but it was really only the third floor, because from the ground floor, you could go up three floors or down one).

The best thing about being in DeCew instead of one of the other two nearby residences was that the cafeteria was in DeCew, and my stairwell was right near the cafeteria.

First semester was great; I ended up with a 94% average in my first semester classes.

Then in my second semester, I found myself eating less and less. At the time, I thought I was just being lazy. I would ask myself, “Is it really worth it? Am I really that hungry to go all the way downstairs to the cafeteria?”. Consequently, by March, I weighed 103 pounds, down from my normal weight of 112 pounds. I still finished the semester with an 87% average (down from my first semester marks no doubt due to my full year French course).

Summer: Getting worse (April – August 2009)

I figured that once I returned home, my eating habits would return to normal; after all, I was probably just sick of that cafeteria food. Unfortunately, that didn’t happen, and I kept losing weight. I was tired all the time, and I couldn’t do anything physical–even walking–for even short periods of time. I wasn’t interested in doing things I normally enjoyed.

In an effort to get me out and feeling better, my dad and I took up geocaching in April. We only went out a few times; whenever we did, I had to stop and sit down a lot. My dad had recently bought a new motorcycle, so we took it for a ride. When we were coming home, my knee started shaking uncontrollably. I’m not entirely sure why that happened, and it never happened again, but I think it really scared my dad.

In May 2009, I made an appointment with my family doctor. He sent me for a blood test and suspected that I would need to start taking vitamins. In a follow-up appointment, he told me that I had low iron, but my other vitamin levels were fine. He told me, “There is no medical reason for you to be feeling this way”.

My health continued to get worse. Even the sight of food made me sick. What I did eat, I threw up. My parents were concerned that I was depressed, so we made another appointment with my doctor.

In June 2009, my doctor confirmed that I was suffering from depression, and in July 2009, I started taking 1.5 tsp of Prozac for depression and 0.5 mg of Lorazepam for anxiety daily (I can’t swallow pills, so that’s why it’s measured in teaspoons). The medication helped my mental state, but not my physical state. I was still tired and throwing up.

Soon, I started waking up in the middle of the night to use the bathroom. Then I started going to the bathroom every two hours, all day and all night.

In July, I went to see Judas Priest and Whitesnake in Toronto with my family. We had floor seats near the back, and everyone was standing up, except me. At the end of the concert, I threw up in a garbage can. Not my best night.

Just before school started again in September, I had another appointment with my family doctor. We decided I would continue taking my medication through the school year. During the summer, he had concluded that I was anemic, so I began taking liquid iron supplements (which I later learned were such a low dose as to be basically useless).

Second year, first semester: Worse still and a diagnosis (September – December 2009)

For my second year, I lived on campus in residence again, but this time, in Village. Village was a newer townhouse-style residence with a kitchen, living room, and two bathrooms. My house was shared among four girls, and two of the other girls and I shared the upstairs bathroom.

In my first semester, I was taking two computer classes, two math classes, a writing class, and a co-op preparation class. I found that just walking to class was tiring, and I would sometimes get a strange pain in my calves while walking, likely caused by my anemia. Sitting in the chairs in the lecture halls was uncomfortable because I was so bony (by this time, I weighed about 90 pounds). If I wasn’t falling asleep in class, I was anxiously waiting for class to be over so I could find a bathroom and throw up. I spent more time in class trying to figure out which bathroom was nearest than I did trying to figure out math problems. Soon, I felt like throwing up whenever it was time to go to class, so I just wouldn’t go. I also started having sharp stomach pains that would last for thirty seconds or so, during which time I couldn’t concentrate on anything else.

My parents drove out from Hamilton to see me once a week, often bringing me food or making me supper in my kitchen. I would put off eating for so long that by the time I had to eat, I was too weak to make anything. I can remember one time pulling a chair over to the stove so I could sit down while making scrambled eggs.

One of the nights that my parents came over, we decided I should drop my calculus course. I had already been thinking about dropping it, so I hadn’t handed an assignment because I had an assignment for another class due the same day. I had stayed up most of the night to finish it — something I had never done before, and have never done when I’ve been healthy.

Speaking of assignments, I often found myself leaving questions blank. I can’t remember what my thought process was there exactly, but again, leaving questions blank, not attempting questions, is something I never do.

I can remember lying on the bathroom floor in the middle of the night because I was so tired, but I knew if I went back to bed, I’d just get up again a minute later to use the bathroom again. I can also remember one night going into the school to use the bathroom because I was embarrassed about how many times I had used ours that day. My roommate who lived downstairs knew about my health problems, and she sympathized because she had her own plethora of health issues. I didn’t talk to the other two girls very much; I don’t know what they thought about me, but they must have heard me using the bathroom and throwing up all the time.

As I have mentioned, I was enrolled in the co-op program. I was supposed to start my first work term in January 2010, but I decided to request to defer my placement until April 2010.

I made an appointment with a doctor at the university in October. He prescribed me 50 mg of Trazodone daily to help me sleep through the night, and he suggested that I start taking a high dose of iron. He also had me do a stool sample test (which was very fun).

I started going to the Student Development Centre to get help with my depression. I only went twice, but I remember feeling better after the appointments. Unfortunately, we didn’t know it at the time, but the depression was a symptom of the Crohn’s and not the cause of my suffering, so there wasn’t much they could do for me.

In December, I had another appointment with my university’s doctor. Due to my stool sample results, he suggested that I schedule a colonoscopy through my family doctor.

First semester ended, and I made it out with a 63% average. I managed to pass all my classes with marks of 50% in data structures, 55% in linear algebra, 65% computer organization, and 82% in writing. Honestly, I never should have passed those first three courses; the academic system failed itself there. I ended up retaking data structures in my third year and getting an 85%, but I should have retaken the other two as well. The fact that I didn’t learn anything in those three classes is probably the number two Crohn’s related thing that still has an effect on me (I’ll get to the number one thing later).

I finished my exams on December 18th, and shortly after, I had an appointment with my family doctor again. He prescribed me 15 mg of Prevacid because he suspected I might have a stomach ulcer or similar digestive ailment. He also increased my dose of Prozac to 2 teaspoons a day.

In the early morning of December 23, 2009, I ended up going to the hospital thinking I had appendicitis, which you can read all about here. Basically, they did some tests and found that I had a perforated bowel. I had a bowel resection that night and had six inches taken out. I was also diagnosed with Crohn’s disease. I remember one night talking with a nurse and tearfully telling her that I used to be smart, but I wasn’t sure if I was any more. I finally got out of the hospital on December 31st.

Second year, second semester: Remission? (January – August 2010)

I started second semester on the same day as everyone else, January 11, 2010. That Friday, I started experiencing stomach pains, and I went back to the hospital on January 18th. Apparently, my bowel had stopped working, which is a common occurrence after bowel resection surgery, but usually it happens right after surgery. I stayed in the hospital for four days, missing my second week of classes.

Since I didn’t get a 60% in data structures, I was deregistered from the databases and logic programming courses. I sent the instructors of those courses emails explaining my situation and asking if they could sign a course override sheet for me. They both agreed. One instructor told me about a friend who had been diagnosed with a similar disease and offered to let me have extra time on the first assignment if I needed it. I also sent emails to my other instructors letting them know about my situation so that if anything came up in the future, I would be covered.

In January, I was supposed to start looking for a co-op placement. Instead, I decided to de-enroll from the co-op program. I had only just recently been diagnosed with Crohn’s, and I didn’t know what the future held. I also wasn’t on any medication after my surgery in December 2009 because I thought I was in remission (I wasn’t). I didn’t know how being in a new environment would work; I was scared. I didn’t want to be at a job and be in the bathroom all day. So I de-enrolled; now, I was just a regular non-co-op computer science student. Not doing a co-op placement is the number one Crohn’s related thing that still effects me; I would be having a much easier time getting a job now if I’d done co-op then.

I ended up finishing my first “healthy” semester with an average of 83%.

Since my overall average for the year was only 74%, I lost two of my scholarships, which needed an average of 80% each year to renew them. However, since there was a completely legitimate reason for my poor academic performance, I was able to get both scholarships back. I spoke with someone from the university student awards office, and they told me what to do. I wrote a letter of appeal outlining everything that happened to me and how it affected my studies. In the end, it was two pages long (though I was told there was no length requirement), and I made sure to be very specific, listing all appointment dates and medications I was taking. I also got supporting documentation from my family doctor, my surgeon, and my gastroenterologist. Considering my marks had previously been very good and had improved after my surgery, and considering I was only 6% below what I needed to automatically renew the scholarship, I’m sure there was no problem when the decision was made about my scholarships.

Third year: This is not remission (September 2010 – April 2011)

I started my third year in September 2010, and I stayed in Village again. My parents and brother moved all my furniture in and set everything up for me, because I couldn’t do it myself.

I was taking my data structures class again with the same professor. I approached her after the first class and let her know what was going on. She probably recognized me, because I was one of only two girls in the class (and one of only handful of girls in the computer science program). I told her that I had been basically a zombie last year and ended up having surgery, and while I passed the class last time, I thought it might be a good idea to take it again, because getting 60% in the class was a prerequisite for a most other computer science classes, and I didn’t want to have to get a course override sheet for every class. She said that she thought it was a good idea too, as long as it didn’t mess up when I would graduate (well, it did, but that was already messed up anyway). She also mentioned that I had been doing well in the class previously, but then I did terrible on the exam (26%).

I was also back taking calculus again, and I managed to get an 82%, which, for math, I’d say is pretty good.

During my third year, I thought all was well. I was in remission; life was good. I didn’t yet know what “remission” was.

My house in Village is on the far west side of campus, and the computer science department is on the far east side of campus. Normally, it should take a person about ten minutes to walk from one place to the other. Instead, when I had to drop off assignments in the computer science department, it took me an hour because I had to stop into every bathroom on the way there (and by that time, I knew where every bathroom in the school was). I wasn’t throwing up anymore, but I was still going to the bathroom all the time. I thought this was normal for someone with Crohn’s disease, and I figured this was just how it was going to be for the rest of my life.

I can remember going to drop off an assignment with my brother one day. We were in the Walker Complex, the nearest building to our residence, maybe two minutes away. I still had to stop and sit down for a few minutes to regain my strength to make it the rest of the way home.

Other than that, my third year was fairly uneventful. I starting seeing my university doctor again because I thought I had an eating disorder–not anorexia or bulimia or any of those kind you hear about; I just didn’t want to eat anything again. He gave me some of those awful meal replacement drinks; I’d been given some in the hospital, and I don’t think I ever finished one. He also thought I was having a flare-up, so he gave me a prescription for Pediapred (which I would guess by the name is Prednisone for kids) and a suppository. He said that they would be like a sledgehammer and just knock the Crohn’s right out. He suggested that I see my gastroenterologist because he didn’t know which part of my bowel the Crohn’s was located in, so he didn’t know which drug would work for me.

Fourth year: Prednisone and true remission (May 2011 – August 2012)

So, eventually I got an appointment with my gastroenterologist. Basically, he was not very sympathetic about my inability to swallow pills, I cried, and he said he could refer me to a female gastroenterologist who I might get along with better. You can read all about my switching gastro docs here. In the end, I started seeing a new doctor, and she was great. She put me on 40 mg of Prednisone (which I crushed up and took in juice) in June 2011, and soon, I started tapering off by 5 mg a week, so I was off them by the time I was back in school. The Prednisone worked really, really well. I felt better than I could remember ever feeling.

For my fourth year, I wanted to live off-campus like normal fourth years do, but my parents were concerned. What would I do if I had to go to the bathroom when I was on the bus? What would I do if I got tired between classes? What if I had a flare-up? I really didn’t want to, but I ended up living in Village again. I was very self-conscious about being a fourth-year living with a bunch of first years. Luckily, my roommates and don were awesome. I was still embarrassed about giving out my phone number–which was an extension at the school, giving away that I lived in residence–when doing group projects.

I had a really good year health-wise, and it turns out that I could have lived off-campus. Better safe than sorry though.

Fifth year: Make-up year (September – December 2012)

Since I had dropped calculus the first time I took it and retook data structures, I was two half-credits short of what I needed to graduate. Also, I decided in summer 2011 to minor in applied linguistics, which meant I needed to take some more linguistics courses. So I ended up doing a final semester in September 2012. I finally lived off-campus like I wanted to in a house with my brother and four other people. I started taking Imuran in the summer, and I didn’t notice much of a difference. I had been going to the bathroom a bit more than I wanted, but after I started taking Entocort during the school year, I was doing much better. I’d like to say I’m symptom-free, but I don’t want to jinx it.

One of my classes was the dreaded three hour 7-10 pm course. Fortunately, the prof let us have smoke/Tim Hortons/bathroom breaks in the middle of class. Unfortunately, one time I decided not to go to the bathroom during the break and immediately started feeling the urge after class started again. By now, I don’t feel too bad about getting up in the middle of lecture and going to the bathroom, but it’s still something I’d like to avoid if possible. After that, I made sure to go to the bathroom during all breaks, just in case.

One night, while taking the bus to class, I had the urge to go. But what could I do? We were still ten minutes away from the school, and I didn’t really have any idea where the bus was, so even if I got off the bus, where would I find a bathroom? I stayed on the bus and went to the bathroom as soon as I got to the school, but it was still a nerve-wracking experience. After that, I was nervous every time I went to that class.

It’s now January 2013, and I have finished university; I’ll be graduating this June. Due to the Entocort, I’ve currently got a rather big face, and I’ve got my graduation pictures coming up at the end of the month. I’ve started tapering off though, so hopefully it will start looking better soon. I’m currently looking for a job and wishing I had stayed in co-op so I would have experience and references, but hey, what can you do? It sucked getting Crohn’s while I was in university. I wonder how much different my life would be if I hadn’t got it (probably not that much different, to be honest, but I would probably be more ungrateful and whiny). It sucks that I had to retake a course and stay an extra year. It sucks that my transcript has some really bad marks on it. It sucks that I didn’t get to be on the Dean’s list that one year, and then because I dropped a course, I missed out on subsequent Dean’s lists because I didn’t have the right number of credits at the time they were awarded. I should have done really well in university, but Crohn’s messed that up.

Anyway, I hope this post helps some people who are struggling in the same situation, and I guess I just want people to know it can get better.