The other day, I was actually very upset because I was asked to attend a Bears game with friends over winter break, and ONCE AGAIN I won't be able to go because of my disease (this is when I will be in the hospital after surgery #2.) This was the same day I decided to write my story. I kept thinking all day how my UC has taken so much from me. Its made me have to skip going on trips, miss going out with friends, made me transfer colleges and at one point had taken my happiness. I threw myself another pity party this day and I kept tearing up about it all. And then I remembered that even though it had taken so much from me, it has also given me so many things that I would have never been able to experience without having this chronic disease. It has changed me as a person, in a good way. Like I have said in many posts before, inspiring people is my number one goal from this experience because I am so thankful that I was able to find people who inspired me without even knowing it. I enjoy the little things in life, I find the silver lining, I want to help others. I have changed my mindset about how to look at things and I am so thankful that I was given the opportunity to feel this way.
So here is what I wrote for the magazine. Im not even sure if it will be published or not, but I wanted to share a preview of it with everyone just in case….
My name is Jacqueline Lopez. I am a
20 year old, college junior at North Park University in Chicago, Illinois who
is about to begin nursing school in the fall. I might sound and look like a
typical college student, but what many don’t know from the outside is that I am
currently living with a temporary ileostomy. I was diagnosed with Ulcerative
Colitis about 2 years ago, when I was attending the University of Iowa as a
freshman. Out of nowhere, I began having terrible IBD symptoms (diarrhea,
severe blood, and weight loss) that went on for months and I had no idea what
to do. I was embarrassed to talk to my close friends and roommate about it
because it was something I had never heard of and it’s not an easy topic to
discuss. After a few months of experiencing these symptoms, I finally got a
colonoscopy, which is when it was confirmed that I had a life long autoimmune
disease, Ulcerative Colitis. My doctors immediately started me on many
different medications to hopefully relieve my symptoms and pain. Unfortunately,
my body didn’t respond very well to any type of drug that I tried (Remicade,
Imuran, Azathioprine…) and after losing about 25 pounds I was admitted to the
hospital for the first time. At this time I spent about 30 miserable days in
the hospital hoping and praying that some medicine would begin to work its
magic on me. I finally was able to leave after taking large amounts of IV steroids
and an immunosuppressant called Cyclosporine. Within the last year and a half,
I still hadn’t been put into remission since I was diagnosed with my disease.
This past July, I was admitted into the hospital for the third time due to my
disease and didn’t have a choice but to get a total abdominal colectomy. I knew
by getting this surgery that meant I had to face life as a college student with
an ileostomy.
If you
would have asked me before the surgery how I felt about getting it, I would
have said a lot of negative things about how people will make fun of me and how
I didn’t want to tell anyone that I had this condition. All I could think about
is how I would be able to tell people about this, especially while trying to
live a normal college life. After waking up from my first surgery, I had a
whole new mindset about how I was going to face this bump in the road and
decided that I wanted to make my condition as public as I could. I explained to
all of my friends and family about my disease and I still constantly post on
social media to try to show people that this disease is more common than many
people would expect. Even though living with an ostomy in college was one of my
biggest fears, I am facing it head on and it isn’t that bad. Since I’ve started
my junior year of college, everything has been going very well with balancing schoolwork
and taking care of my ostomy. Unlike before, I can actually attend class
without having to worry about running to the bathroom. My grades have been
improving because I no longer feel sick anymore and I can actually focus on
learning rather feeling sick and always wondering in the back of my mind if I
would make it to the restroom. My disease has made me very passionate about
going through nursing school in hopes to be an IBD nurse so I can help others
who suffer and go through the same daily struggles as I do. The days that I
don’t want to study for a test or go to class, I always end up thinking about
how all of my hard work will pay off by being able to provide others with the
compassion and care that the nursing staff gave me when I was a patient.
One of the biggest pieces of advice that I can
give to someone who has an irritable bowel disease in college is to find a
friend or a group of friends that you trust and tell them everything about your
disease. By being able to confide in someone and share your
experiences/concerns with them, it allows you to not have to go down this path
alone. The first people I told about my ileostomy and surgery were my two
roommates who were very understanding and willing to do anything to help me
along the way. It differs greatly from person to person about whether or not
they want to tell others about their disease or ostomy. I knew that by sharing
my story with everyone, including college kids, I would have to face the few
people who have negative things to say about it. For only having an ileostomy
for 4 months, I have already experienced a few times where people have said
horrible things about me and would purposely try to knock my self-esteem down.
Whenever this would happen, I would always just look at the big picture and
realize that everyone faces different challenges in their lifetime, and this one
just happens to be mine. I remind myself that getting this surgery potentially
saved my life and has made me an all around better person. Even if there are
those people who say negative things, I learned that is was best to just brush
them off and remind myself that my quality of life has improved tremendously
and nothing that anybody says could make me regret this life long choice I have
made.
I am
finally having a normal college experience compared to the horrible times I was
going through my first two years of school. I am able to go out with friends,
go to football games and do every day activities without a worry. I can pretty
much eat and drink anything I want to (which is always a plus when my roommates
and I order late night pizza!) Many people wonder about how dating works when
you have a condition like this, and once again that differs from person to person.
My goal during this time is to focus on myself so I haven’t experienced much in
that topic, but if I were to date anyone, I would just say that honesty is the
best thing. I look at it as being way better to tell them about an ostomy then
having to hide running to the bathroom every few minutes. Now that the seasons
are changing, clothing for the winter isn’t as much of a problem than when it
was the summer. There are still times that I am unable to do certain things
because of my disease, which is hard to accept at times. It makes me frustrated
and always leaves me with the same question, “why me?” But like I’ve learned
over and over again, there’s a silver lining to every situation, even if it
takes a bit more effort to find it. My second surgery is coming up in December
followed by my third in March. After that, I will be proud to say that I faced
my biggest fear of being a 20-year-old girl who went through everyday college
experiences with an ileostomy.
“A life not fought for would be so much easier, but so much
less appreciated”
xoxo
--- JKL
