Last January, I was attending the University of Iowa as a
Freshman. Winter break had just ended and it was the first weekend back so a
bunch of girls were very excited to go out to the bars on Friday night. For
some reason my stomach had felt really upset, but I thought nothing of it and
continued to drink and party my night away. Waking up the next morning I was
constantly running back and forth to the bathroom because I was still having a
very upset stomach from the night before. I quickly jumped to conclusion and
thought that I had just eaten something (probably some of the nasty dorm food)
and had gotten a mild case of food poisoning. A few days had passed and I
was still having the same problem of running to the bathroom because of an
upset stomach. I was getting a little concerned because I didn’t think food
poisoning lasted that long. I decided to tell my boyfriend at the time about
what was going on and he told me it probably wasn’t anything to worry about and
I agreed. A few weeks had passed by and my symptoms were starting to get worse
and worse. I was beginning to have very runny stool, and after some time I
started noticing blood in it. This freaked me out a lot because I always heard
that if you see blood, something must be wrong. I finally told my mom about the
situation because I figured I would probably have to see a doctor. I was very
embarrassed to talk about my “bathroom issues” because it’s not something I
would ever normally do. I had set up an appointment with the doctor at
the University of Iowa Hospital and i was very nervous on what they would do
and what they would tell me. I went in and told them all of the problems I was
having, but they couldn’t diagnose me with something right away. I had to go
through many different blood tests and stool tests. Meanwhile, I was still very
embarrassed to share any of this information with my friends at school. I
really should have though because going to the doctor many times alone made me
upset from time to time. After many trips to the hospital, I still didn’t have
an answer on what was wrong with me.
Spring Break was coming up and they told
me to try and schedule a colonoscopy with a doctor close to home. When I heard
this, I automatically freaked out because I didn’t want people i didn’t know shoving
stuff up my butt! After hearing my mom say how this is the best thing for me, I finally agreed to the procedure. The night before my
colonoscopy I was required to drink the detox drink that basically “flushes
your system out.” I was supposed to drink one 12oz cup of the liquid at around
8 pm and then wake up at around 3 am and drink another 12oz. Even though it
tasted HORRIBLE, I finished the first cup in no time and was noticing the
effect of it right away. After a few hours of running back and forth to the
toilet, I finally laid down to get some rest before the “big day.” I woke up at
3 am again to try to down this next cup so I could get it over with, but
tasting that drink again upset my stomach so much worse than it did before and
I ended up throwing up half of the drink. I didn’t care at the moment because
all I was concerned about was going back to bed. The next morning came
way too quickly and I was up at the crack of dawn to go to my appointment. Dr.
Tasiou at the Grayslake office was going to be the doctor doing the procedure
and he had told me he had done many of them before so I had nothing to worry
about. My boyfriend came with me because I was mostly nervous about getting
put under because I never had before. I remember them bringing me into the room
to get anesthesia and the doctor told me to count to 5 out loud and I only
remember counting to 4. The next thing I know is I am awake and not knowing whats
going on. The doctor had informed me that they had already done the colonoscopy
and I was going to be kept in a room until the anesthesia wore off. My parents
and boyfriend joined in the room with me and laughed at my voice and the things
I was saying (I honestly don’t really remember!) A few moments later Dr. Tasiou
came in with pictures of the inside of my colon and explained that they were
pretty sure I have something called Ulcerative Colitis. I had no idea what that
even meant. He explained how my large intestine is “sick” and usually people
who have this Irritable Bowel Disease get it around my age. Even though you
can’t “cure” the disease, he told me that they have plenty of medication that
people take and it helps make them have a normal life again.
Feeling good
about it, I went back to school at the end of break trying a few different
medicines (I don’t remember which ones now since I’ve been on so many.) I
thought that the medicine might take a little bit to start working, but I never
really noticed any type of improvement. Actually, I was getting worse week by
week. The urgency was getting to be the worst of everything. I couldn’t go
anywhere without being worried about where the bathroom was and if I would be
able to make it in time. I also noticed that I was losing more and more weight
each week (which i was kinda happy about being a 18 year old girl) but I knew
it wasn’t healthy. Things got to be so bad, I refused to go to many of my
classes because I knew that I would end up having an “accident” because I
physically could not control my bowels anymore. I would cry to my parents on
the phone about how uncomfortable I was everyday. Finally, my mom spoke with a
doctor and told me I needed to be admitted into the hospital at home ASAP. My
mom made my buy a bus ticket on a Wednesday afternoon back to Grayslake, Illinois
and I was in the hospital by Thursday morning (EXACTLY 1 YEAR AGO FROM TODAY!)
I ended up staying at the Lake Forest Hospital for about 5 days and they had
tried other medications on me, including Remicade, in hope that my body would
respond to it. They didn’t think I was ready to leave the hospital just yet.
Dr. Tasiou requested that I go to the University of Chicago Hospital where I
could see an expert, Dr. Rubin. I ended up going there for a few days where
they monitored me very closely and took blood tests everyday. I wasn’t
feeling any better. Around the 8th day, my favorite doctor, Dr. Jami Kinnucan
told me that my inflammation levels were going down significantly from being on
the steroids (Prednisone) and that I could be released and go back to school to
finish the semester. I remember going home and getting ready to leave back for
school crying because I knew I wasn’t feeling any better even though the
doctors told me I was getting better. I was so scared that during the 4 hours
back to Iowa City, I would end up having an accident because we wouldn’t be
able to get to a bathroom fast enough. I was okay once I got back to
school and I knew I only had about a month left and then I wouldn’t have to
worry about school work on top of my freshly diagnosed disease.
The next few
weeks were some of the worst weeks at school. I didn’t want to eat anything
because it would go straight through me, I was in a lot of pain, and on top of
everything I was very embarrassed to be living in a dorm and having to share
the same bathroom with about 25 other girls. Multiple times a night I would
have to RUN to the bathroom in order to make it just in time. The mornings and
nights were always a lot worse than during the middle of the day. I say its
because my colon is “sleeping” while I am so when I wake up, it does too and
wants to get rid of everything right away. Finally finals week was here and I
was MISERABLE and so stressed out about my classes. I couldn’t even get myself
to study very much because I was so uncomfortable and just very sick that I was
sleeping a lot. I ended up taking one of my finals on that Tuesday and I got an
A on it (thank god!) but I still had 3 more tests on that Wednesday and I knew
I wasn’t ready. Once again, I was MISERABLE. I called my parents bawling my
eyes out because I physically wouldn’t be able to sit through my test without
having to use the restroom. My dad decided that he should come and get me and I
would have to miss my tests because I needed to go back to the hospital. He got
there within about 6 hours of me calling and we packed up my dorm room as fast
as we could. Thankfully I had an amazing roommate, Alexa, who did a lot for
me.
The days in the hospital were very rough. I spent almost about 30
days in the hospital all together because of my colitis. At times I thought
things would never be better, I had never been in so much pain and haven't been more depressed in my life. My first few weeks I refused to eat anything
because I was constantly nauseous. The nurses were getting worried about my weight
because I had already dropped 20 pounds and I looked very thin for my height.
After many different medications, they didn’t think anything else would work.
They told me I would have to get surgery to get my large intestine taken out,
and I even had surgeons come in to talk to me about the procedure. I was so
upset, being an 18 year old girl and thinking about having to live with an
ileostomy bag attached to my stomach. Thankfully, they told me there was one
last medicine I could try but it is very harmful to your body. It was called Cyclosporin. After a few days of that, HALLELUJAH! I was feeling 1000x better
than I had been. I even ate a WHOLE pizza to myself one night because I was
feeling that great! I was only in the hospital on the Cyclosporin for about 5
days and I heard rumors about me being able to leave to go home. At the time, I
wanted nothing more… being in the hospital for that many days in a row was
depressing! Especially when all my friends were on summer break and having fun,
while I was spending my days in a white room in bed all day. The day finally
came and I was released! I had never been more excited in my life to be able to
step outside and breathe in fresh air.
Through out this year and a half I have been on so many
different medicines, I cant even remember all of the names. Since sometime mid
semester, I have been on one called Tacrolimus and the usual steroid (the one
that makes me cheeks extra big!) called Prednisone. I have been getting so
excited because I have slowly been decreasing my dosage on the steroids in hope
that I will finally be off of them. I have been on them since about September
and I am so sick of it! Not only does it make my cheeks large but it also makes
me shakey and I just know how bad it is for my body to be on them for that
long. As I have been decreasing, I hadn’t noticed anything going wrong so I was
starting to get very hopeful that maybe my body would finally respond to a
medicine for once. About 2 weeks ago, I had officially stopped taking the
steroids and I couldn’t have been happier. However, since I've been off of the
medicine, I automatically noticed things starting to go downhill. My symptoms
were becoming a lot more noticeable and I was starting to feel miserable again.
Even though I was dreading it, I did tell my doctor about it and she told me
how I should go back on a lower dose of them. So here I am again, back on the
steroids!
Only about a month left until I can try the new infusion
drug coming out! I’ve made it this far, so a month will feel like nothing! Just
trying to think good thoughts!
-- JKL
