I wrote this for an English paper my senior year in college. The paper was assignment was to write about something about you that has shaped you into the person you are today. I chose my battle with Crohn's disease because it is such a huge part of my life. Since I wrote this paper, I have had many more obstacles to overcome (Arthritis, abscesses... not fun!) However, I always try and stay positive... it gets hard though. Well, here's my whole story. I hope it helps some of you to know that you are far from alone.
Spring Break 1997 changed my life forever. What
was supposed to be an exciting week of fun instantly became the most
life-altering experience. My three friends were coming to my house in
South Florida to enjoy the week off of school and to relax in the sun. We
had planned many excursions to places all around Florida....journeys that never
took place. A few months back I noticed that my eyes
were bothering me. My vision was extremely blurred and I noticed that I
was constantly seeing flashing lights and random spots in the air that were not
seen by anyone else. I knew something was terribly wrong, yet I was in
denial and settled my denial with thoughts that I just needed glasses. So,
I nonchalantly mentioned to my mom to make me an eye doctor appointment for when
I would be home, Spring break. She made me an appointment and I tried to
forget about it for awhile.
Spring break finally came and my friends and I left for our
much awaited vacation. I remember it like it was yesterday. We were
all at my house enjoying the beautiful weather at the pool side. My mom
opened up the sliding glass door and told me it was time to leave for the ophthalmologist.
At the moment I knew my life would never be quite the same. We arrived at
the doctor and I remember being terrified. I could hardly even breathe
because I knew once he examined me he was going to find something terrible.
I was right. He took one look at my eye through his machine and then did a
double take. He said, "What she has is Uveitis and I need to send her
to a specialist because this is out of my hands". I needed to treat
this as soon as possible or it could result in blindness. Well, that news
was no surprise as I knew something was seriously wrong with me. However,
it was confirmation of something that I was dreading and petrified of. I
started crying as my mom and doctor made plans for me to visit the Bascom Palmer
Eye Institute in Miami. I remember excusing myself to use the bathroom and
completely losing control. I literally laid down on the bathroom floor and
began to sob. How could this be happening to me.
The next morning my mom, dad and I went to Bascom Palmer.
I did not sleep at all the night before and was eagerly awaiting the sunrise
with hopes that light would relieve my dark, silent thoughts. The car ride
seemed endless with small talk and soothing words from my wonderful parents. But
no words could make my fear go away. When we arrived at the
institute, my examination began with an extensive discussion with a really nice
doctor about my medical history. It turned out that Uveitis is a systemic
disease and is the result of another underlying illness. Great, something
else is wrong with me. At that moment, I was convinced it was fatal
and I was going to die at age 18.
The next step was to send me to what seemed like a billion
specialists to find what was causing my eyes to develop this rare disease.
I had no idea. I was not sick, or so I thought. My mom asked me if I
was feeling any symptoms, in any part of my body, and tried to find out if
everything was working and feeling like it should. I told her that I was
having diarrhea frequently, but that was just because of all the junk food I was
eating in the dorm. She told my doctor about this symptom and he
immediately said that I needed to set up an appointment with a gastrointerologist.
My dad made some phone calls and got me an emergency appointment with a GI
doctor the next morning. Here, I was scheduled for a colonoscopy, so they
could examine me internally. Never before had I experienced any kind of
surgery, and this type seemed like hell to me. Again, why is this
happening to me.
Spring Break ended and my nightmare began. We all went
back to UW and I planned on returning home in four days for my scheduled
colonoscopy. I went
through the motions of life that week, but inside I was falling a part. My
mind was racing with a million thoughts causing me to have sleepless nights and
no appetite. I was dreading this procedure, but truthfully I was fearing
the diagnosis in a way that consumed my entire being. Please let me be
okay. I will do anything.
I woke up in the recovery room to my moms emotional face
looking over me. She looked relieved but concerned and at that moment I
knew I was going
live. My doctor came in and announced that I had Crohn's Disease.
Fortunately, prior to the procedure, I researched it with my sister and
found out exactly what it was. I knew it was chronic but not fatal.
And people can live normal, happy lives with it. But still, I had a
DISEASE. What now? Am I okay? Am I going to go blind or is Uveitis going
to go away? At this time my gastro symptoms were mild and I was prescribed
Asacol to take three times a day as well as eye drops for my uveitis. The
medicine kicked in shortly and I was feeling like a new person. The
diarrhea stopped and my eyes were slowly returning to normal. I went home
for the summer and began working out and learning how to eat in a way so that my
stomach would stay in a state of remission. I felt better than I have ever
felt before, and in some ways I blocked out the fact that I even had Crohn's
Disease.
Less than a year later, my denial hit me hard in the face.
I began to get extremely ill. It started slowly with dull pains in my
stomach. I thought they would go away, but they didn't. For a long
time. I remember waking up one morning and being completely sick to my
stomach and unable to put even a morsel of food into my body. I was going
to the bathroom uncontrollably, and after a few days began discovering blood in
my stool. One night I was up the whole night sick to my stomach. My
cousin and roommate, Abbey, came into the bathroom and I was hysterical crying
as I told her I was very sick. She comforted me and drove me to the
emergency room. There, I was told that I was having a "flare
up", one joy of having Crohn's disease. Okay, I can handle this.
Just give me some medicine and make my pain go away. I had no idea that
this flare up would last over two years and the medicine I was about to start
ingesting would alter my mind and body in
ways that I never thought possible.
As I left the hospital, my mom's plane took off
bringing her to Madison to take care of me. This was the beginning of my
nightmare. My mom was simply incredible, and I truly do not know what I
would have done if she did not come to be with me. She took charge of the
situation and scheduled me an appointment with a GI doctor at UW-hospital.
I left the hospital with a prescription for Prednisone and hope that it would
make me better. And it did. However, it is a very toxic drug with
many horrific side effects. After researching it extensively, I was eager
to stop taking it. I knew that it was a steroid and one must be tapered while
taking it. If not the consequences could be fatal. So, I was
determined to wean off it. I started to feel better and thought that my
body was ready to end this treatment. My doctor took my word as he had no
way of knowing how I was doing internally, and he lowered my dose. I
thought it was the right time. I have never been so wrong in my life.
Two weeks later, an even worse flare up possessed my body.
I have never been so ill in my life. My mom flew back to Madison and
stayed for almost a
week. I needed her so badly. My doctor at UW hospital scheduled and
emergency colonoscopy to find out what was going on in my colon. He
discovered severe ulcers and I was indeed having a flare up. So, this is
what it means to have Crohn's. Why is this happening to me now? I
have been so good.
My doctor raised my dosage of Prednisone and prescribed me
another immune suppressant drug called azathaprine. I just wanted to feel
good. How bad
could the side effects really be? Little did I know. In two weeks
time I gained ten pounds. I couldn't sleep at night and was always moody
and sad. Being at school was not a conducive atmosphere to my condition.
I tried to stay as positive as possible but my spirits were dying quickly.
I felt ugly, depressed and to top it all off I could not enjoy or engage in many
activities I was used to. I needed to get a lot of rest and take care of
my body. Alcohol was out of the question, and that was a hard situation
being at college, surrounded by all of my drunk, crazy friends. My
boyfriend and I were fighting for awhile because I was so moody and felt like he
could not understand my feelings or what I was going through. My
life was anything but smooth and I was sick, sad and angry. I needed to go home.
I spent the summer focusing on getting better and it was
working. My pains were lessening everyday, but I just did not feel the way
I used to feel. I could not help but feel that I was never going to fully
recover. Am I ever going to be normal? I went to a nutritionist and
tried to take the holistic approach. It didn't work. I was still
taking a large dose of Prednisone and feeling the side effects tremendously.
My entire body was changing. I was gaining weight rapidly and my face
looked like I had a big gumball in my mouth at all times. Inside, I was
miserable yet I tried to put on a happy face and be strong. What got me
through this time was my extraordinary support system. I truly felt that
when I got diagnosed with Crohn's disease the rest of my family did as well.
They made it their priority to make me as happy and loved as possible. I
never felt alone. Although they never would fully know how I was feeling,
they did an unbelievable job trying. This changed my outlook on the entire
situation and instead of asking why , I felt lucky to have such wonderful people
in my life. My boyfriend was another wonderful support system.
Through it all, he never stopped telling me how beautiful I was or how much he
loved and wanted me. Although I found this hard to believe, it kept my
self-confidence higher than it would have been. I felt like a different
person yet he never let me dwell on it and for this I owe him everything.
I returned to UW in the fall with great spirits and a mission
to get one-hundred percent better. I had plans to leave for London in the
spring, to study abroad, and as far as I was concerned nothing was going to stop
me from going. I was feeling decent health-wise, but much better than I
had felt in a long time. I was working out again and attempting to lower
the Prednisone. I started to feel better about the way I looked and began
feeling like my old self again. However, with Crohn's disease you never
know when it will strike again or in what part of your body.
One Sunday in October, I awoke with an unusual red bump on my
lower left leg. Instantly, I knew that it was not just a normal bug bite
or bruise. It hurt and was very tender to the touch. Within a couple
of weeks it spread and became extremely large. The pain was almost
unbearable. I could hardly walk, let alone work out. I went to my
doctor when I could no longer take it anymore and he said that I needed
immediate hospitalization. I was terrified. I felt like a character
in a scary movie who the monster keeps chasing and won't stop until she's
destroyed.
Once again my wonderful mom flew to Madison to be with me
while I was in the hospital. The whole time she was there I kept looking
at her and thinking what an incredible person she was. No matter how
terrible the situation was, with her by my side, things seemed okay. I was
hooked up to intravenous steroids, and they basically tried to bombard my body
with high doses of Prednisone. Please just let me be okay. I want to
go to London. The treatment worked and my leg was getting better
everyday. My mom left and all I had to do was get through finals.
This happened to be the hardest part of the entire ordeal. I was taking
huge doses of Prednisone and my mind was going crazy. I was crying all of
the time and extremely depressed. I gained a lot of weight in a short
amount of time and felt like a beast. I tried to be strong and I was.
My health was returning and I was in better spirits.
Therefore, my parents allowed me to follow through with my plans to leave for
London in January. Secretly, I was petrified. What if I have a
relapse? My doctors aren't going to be a drive away this time. Can I
really handle this? I decided that I had to do this trip for myself. I was
not going to let Crohn's take control of me...I was going to take control of it.
I held my head up high and told my parents that I could do it-I believed in
myself. And so did everyone else.
The time I spent in London turned out to be the most
wonderful thing I could have ever done for myself both physically and mentally.
I felt great while I was there and enjoyed myself to the fullest. I was so
grateful that I had the chance and the health to embark on such an incredible
journey. However, my battle with Crohn's struck once more while I was
there. On my right leg this time. The same type of ulcer began to
form and I was developing pyoderma gangrenosum again. WHY? WHY? WHY?
My plans to back pack around Europe were dismissed and I left as soon as my
finals were over. I was in an extremely depressed state, yet I was
tremendously thankful that my health held out for as long as it did.
My parents brought me straight to the emergency room and my
doctor chose to sky rocket my dose of Prednisone. At that point, I didn't
care anymore. I was so used to things going wrong for me that I simply
lost all feeling. My spirit was hidden below all of my anger and sadness.
To top it all off, I had gained a total of forty pounds and could barely look at
myself in the mirror. I spent the summer working with a personal trainer
and trying to taper the steroids. I was losing weight and feeling okay.
Throughout the summer my leg kept flaring up and I would instantly be back at
square one. It was the most frustrating few months of my life.
Thankfully, my family and boyfriend were there through it all making my life
easier and bringing out the smile that was hiding from my face.
In August, I went to a specialist who took me off of the Prednisone
and added the drug Cyclosporine to my life. It was a miracle drug for me.
My leg began clearing up and I began shedding the side effects that had plagued
my life for over a year. Finally, something good was happening to me. Although
Cyclosporine is not Tylenol and is extremely toxic, I was being closely
monitored and it was working!! That leads to me to the present day where I
am still taking Cyclosporine and feeling like a new woman. My leg is doing
well and my stomach is in remission. I have lost most of the gained weight
and feel like a human not a beast.
I have realized many things because of Crohn's disease and
not all of them are bad. Actually, most of them are positive. I know
now that life and health are not things one should ever take for granted.
Without your health, you truly don't have much. I have learned to be
strong and to take any curve balls life throws my way as gracefully as I can.
Obviously, I can not be happy when I am sick, but I know now that things could
be worse. I have grown up a great deal over the last couple of years.
I truly believe that everything happens for a reason and if this is my destiny,
than so be it. I now make a concerted effort to cherish each day like as
if it was my last. I have also come to know myself and my body in a very
intimate way. I am my biggest fan as well as my own protector. I
feel a huge sense of pride and accomplishment when I think of all that I have
endured and overcome. But, most importantly I have learned the importance
of family and love. They
undoubtedly have gotten me through all that I have been faced with.
Whether they know it or not, I have more gratitude and love for them then I ever
thought I could feel.
As my life moves forward, I pray my health will remain in a
state of remission. However, if it doesn't I know now how to handle it.
I have become a better person because of Crohn's disease and it has opened my
eyes up to what is important in life. And for that I am thankful.