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I Would Not Change a Thing

By: Amanda Leela
I have been asked countless times, What actually happened to you? How do you live
such a normal life now? What would you change? What do you wish you could have done
differently? and the list goes on. The truth is I would not change a thing.
I was diagnosed with Ulcerative Colitis, an autoimmune disease that targets the large
intestine at 16 years old. What you are about to hear is certainly not pretty, but it is what it is.
People are unaware of how violently and quickly this disease can attack your body, and I will
never forget the morning it all happened. It was the beginning of the school year when we were
having a practice fire drill. I remember finishing the morning assembly, receiving my prefect tie,
and saying to one of my friends, Wow, my stomach hurts as we walked outside into the
parking lot to line up. I proceeded along with the day pinching at my stomach quite constantly.
That evening was Parents Night, and as prefects we had to host the event. I looked at my prefect
supervisor and said, Im sorry, but I have to go home immediately. I could hear all these
growls and gurgles in my stomach and went home to the lay on the couch. I looked at my mom
and said, It feels like there is a knife inside my stomach and it gets sharper and deeper each time
I breathe. I could tell my mom knew something was up as I described the pain; she had this look
on her face that I will never forget. Needless to say, I had been bleeding for 2 weeks prior to this
point, but as a 16 year old I thought I was having a weird period. I never knew what Ulcerative
Colitis was, but with my dad being in remission with UC for (20 years) my parents were quite
educated on the sickness and took me to Sick Kids Hospital immediately.
After leaving the hospital the first time with Prednisone, (a steroid used to treat UC) I
was advised that within three days I would begin seeing improvements and I did. I went back to

school and I begged my parents to still go on their Mediterranean cruise because I was feeling
better. It was not until I went to the washroom the following night. All that covered the toilet was
blood, my body felt cold and heavy; my stomach felt like it was exploding. My poor little
grandma was taking care of me while my parents were away but she was unable to drive me
downtown back to Sick Kids Hospital. I called my neighbours who are also lifelong friends and
they graciously drove me to the hospital. The reason why I call my parents superheroes seven
years later is because they somehow managed to get off their cruise ship that was across the
globe, take all means of transportation, and be in my hospital room holding my hand 36 hours
later. I felt so dehydrated and ill that when receiving the IV needle, the nurse had to try ten
different veins until I projectiled onto her. She has parasites, said one doctor, the next doctor
said, Has any called gastro? My mom said, She has Ulcerative Colitis, I know it, I know what
it looks like.
My Gastroenterologist finally gave my mind the relief it needed. A number of rectal
exams, endoscopies, colonoscopies, ultra sounds, and X-rays later, it was determined I had
Ulcerative Colitis. I looked at my dad and figured that it would all be okay because he is okay,
yet I was sadly mistaken. You know those high pitch screams you hear on playgrounds? That was
me wailing in pain each night I was in the hospital waiting for the new medications to kick in. I
did not know it was humanly possible to feel so much pain.
Throughout this whole experience, I will never forget the night I was rushed to the OR
for emergency surgery. It was cold, the air was just cold; I remember that. I hate hospital lights
and they were flashing at me rampantly as the gurney was being pushed through the halls.
Screaming and wailing in pain, a nurse says to me, So Amanda, you are going to have a bag
when you wake up from surgery and we just want you to be aware of that, please sign below. I

signed some papers and off I was. When the first incision was made, my colon had actually
exploded. It did not feel like it was exploding anymore, it had completely turned black. It was as
if there was a fire that had been burning inside of my body. With such a diseased colon, time was
of the essence before my body was poisoned from my intestine. My surgeon said my colon was
like wet tissue paper, and it would fall out of her hands and break when she would try to pull it
out, doubling surgery time and resulting in more bacteria exposure. Back and forth my parents
paced outside the operating room for hours. She did it, Dr. Himidan saved my life in more ways
than I can ever thank her for. She remained true to continuing with laparoscopic surgery to
minimize my scaring, she stuck with me even though it took double the amount of time to
remove my colon, and more than that, she cared for me like I was her own.
There were really loud cries. Not from me but from the baby next to me in the recovery
room. The morphine was in full effect when I woke up. When I tried to look at my stomach I saw
the bag. What the heck was that thing? I hated it from the first time I saw it. Why is it there?
What is this? I cried to my parents. I had no choice; it was the thing that was going to keep me
alive for the next 8 months until my second reconstructive surgery. Two weeks turned to four
weeks, which turned to six weeks, which turned to eight weeks, which turned to, I stopped
counting at that point. I developed a lung infection with fluid that needed to be drained out from
my hips. I went in for another procedure to have a pic-line inserted into my arm where they kept
me awake because I had undergone too much anesthetic. During this procedure I had a tube
pushed through my aorta, which is the main vein that pumps blood from your arm to your heart,
as my body had chemical burns from all the IVs. When I was carried to the bathroom all I could
see were buckets of blood. Thirty-six buckets of blood in one day. I remember this because there
was a chart in my room tallying how much blood I had lost each day. I need a transfusion

please, but no doctor would listen until my hemoglobin levels dropped to 60 in the middle of
the night. I had to sit awake for 6 hours as I watched my transfusion take place, feeling someone
elses blood circulate through my veins. The pain had really never gone away. It was just masked
by the pain medication, but of course the pain doctors do not talk to the surgeons, and the
surgeons do not talk to the gastro doctors, and I was inevitably overdosed on morphine
collapsing into a seizure in my fathers arms, while foaming at the mouth.
I had not eaten in two months and lost 25 pounds. I could barely lift my own head off the
pillow, but one of my most vivid memories is when my friends mother washed my hair after two
months off of my hospital bed while draining the water into a garbage can. When everyone left
my hospital room that day, friends and family, I remember looking at my mom saying, Mom,
Im done. I closed my eyes and truly believed I had no more fight left in me. My mom put my
IPod in my ears and the last song playing was Read My Mind by the Killers. It was a tranquil
moment and I cannot really describe it, but it snapped me out of the self-pity I was feeling at that
moment. It took another two weeks of recovery, but when I was finally released from the hospital
and went home, I had never appreciated myself, my body, and my mind so much.
I desperately wanted to go back to school but I was not strong enough yet. I was
determined to graduate that year and I did whatever it took to complete my work. I am very
grateful and thankful for the high school I attended because of the support displayed by the Head
Master, Senior School Director, and all faculty members, even those who did not teach me that
year. Additionally, this was the year in my life where I developed some of my strongest
friendships and let go of others. I was learning a great deal about life and realizing who and what
mattered most to me. I changed. The nuances of high school and the drama that comes along
with being a teenager was the least of my interest. People who chose to be negative towards me,

I chose to wish them well and move on from. I felt relief for the first time. There was something
just different about me. I guess that is what happens when you reach a moment in time where
your family and doctors cannot look you straight in the eye and tell you that you will make it. I
surrendered to the odds and learnt to accept the cards that were dealt for me.
Once I made it out, I wheeled myself around school for a few weeks, but that did not
bother me as much as having to empty my bag six times daily. I could not do it on my own and I
truly respect and appreciate the help displayed by two wonderful friends with strong stomachs
who would help me with this every single day. I was getting back into the swing of things, and
even though I could not fit my kilt around my bag, I still felt normal because no one made me
feel different. People still looked at me for who I was and that was one of the most beautiful
things to experience.
It was a Monday morning and we had our weekly prefect meetings and I missed it. I had
subconsciously ripped my bag off of my stomach in the middle of the night, covered in blood
and well I am sure you can guess the rest. It became a pattern. I would rip my bag off multiple
times a week during my sleep and I realized that I so desperately wanted it gone. I was 17 at this
point and I thought I had accepted it, but I never actually did. The final straw was the night of
our semi-formal, Wear spanks, my mom said. I had never worn these before but just in case
someone accidentally tugged on my bag on the dance floor I wanted to be protected. My bag
somehow exploded and it burned as if a match was being held onto an open wound. My friends
and teachers brought me to the bathroom where I had never felt more embarrassed to lift up my
dress, feeling crowded as everyone look at the stoma (pulled out blood vessels) on my stomach.
Someone please call my mom! Before I knew it, my mom had changed me and I felt like a
baby, completely helpless.

This felt like one of the longest years of my life because in February I was going for my
reconstructive surgery where my small intestine was being cut in half to form what they call a J
pouch (to act as a large intestine). What I thought was going to be a simple two hour surgery was
actually 12 hours. It was flashback after flashback from the first time. My body got tense and I
felt the tears stream down my face and onto my nightgown as I was reluctantly pushed into the
operating room. When I woke up I reached for my stomach excited to no longer have my bag but
it was still there. Why was it still there? This time I also had a rod inserted into my stomach
where half of it was internal and the other half was protruding externally. It was getting caught
on everything and causing the skin around it to rip. It was moments like this where I realized
how absolutely powerful our bodies are, how they adapt, and how important it is to remain
positive. I changed my attitude and gave myself a fresh new perspective and accepted the fact
that yes, my life will be different and that was okay.
Two months later I was officially having my last surgery to have my bag removed and it
was supposed to be in time before prom. My prom committee co-head and I would plan out ideas
from my hospital bed and I felt like I had something to look forward to. The big thing in grade
12 was who is going to ask who to prom. I was hearing all about prom pomposals and I was
nervous no one would want to ask me after all I had been through that year. Needless to say, I
was asked to prom by a person with a kind heart and I finished the school year crossing the stage
wearing my kilt for the first time in eight months. I was awarded with a plaque that said, To the
student who swims across the tide. That year, I learned how to not be sorry for who you are, not
feel sorry for yourself, to stand up for yourself, be less sensitive to minute matters, and care for
others with all of my heart.

If there is one thing I can leave you all with it is that we will all go through our own
obstacles in life and they will each teach us something about ourselves. Some of our greatest
challenges are our biggest lessons and I would truly not want to change what happened to me. I
thank you Sick Kids from the bottom of my heart for giving me a second chance and for all of
the people who experienced this journey with me. I am and will forever be grateful for your love
and support. For those new people in my life now, thank you for exuding positivity,
understanding and respecting me for who I am. Lastly, to the rest of the children experiencing the
pain of Ulcerative Colitis, I had one of the rarest cases ever seen and I want you to know that I
am with you not only as a mentor, but your confidant, friend and support.

Remember: A warm smile is the universal language of kindness.