My UC Background

       When I was six, my mom started getting really sick.  At the time, I didn't know what it was, why my mom was always in her room and always tired.  Eventually, after a month of being extremely sick, my dad took my mom to the emergency room to find out that she had Chron's Disease.  At admittance, she weighed 88 pounds, was throwing up everything, had a racing heartbeat, and looked skeletal.  After a few weeks in the hospital (including her birthday) my mom came home and started getting better.  Of course, back then I had no idea what was going on with my mom.  All I knew was that she was sick, but I had no idea to what extent.  Little did I know that around ten years later, I would be battling almost the same thing.

         It was my sophomore year in high school and I was working hard rehearsing for my school's production of West Side Story.  I was super excited that year because I was chosen for a solo.  When October hit, I noticed a little blood in my stool.  I thought nothing of it, only that I would watch for more blood over the next few days.  Well, over the next few days, I did notice more.  I was hesitant to tell my mom because I was afraid she would be worried about me since she had Chron's and knew the symptoms.  We waited a little while until the blood got worse and I got more stomach pain.  We went to my doctor and she suspected that it could be Chron's since I had the symptoms and there was family history with it.  She checked for fissures (very painful experience) and gave us a number and recommendation for Children's Mercy.  Since I was only 15, I was unable to go to my mom's GI, so we had to go downtown. 
         A few weeks later, my symptoms got much worse.  My stools were tar black, I had many stomach aches a day, and it was starting to affect my school work.  I remember being in the bathroom after having a terrible stomach ache and looking into the toilet and being extremely afraid for the first time for my life.  We still didn't know what was wrong with me and my appointment for my GI was still weeks away.  Eventually I had that appointment but I was already very sick.  I had lost probably around 10 pounds and was getting fairly anemic and weak.  They scheduled a colonoscopy two weeks from that appointment.  The next week was the week before opening night of my school's West Side Story production.  It was almost impossible for me to participate.  I remember having stomach aches and running to the bathroom in between stage time, hoping I would get back before my next scene.  Also, back home, my sister and I decided to have a Halloween party.  I got off rehearsal and went home, excited for this party.  I ate almost everything in sight, candy, pizza rolls, bagel bites, taquitos.  BIG mistake.  I missed most of my party because I was in the bathroom. 
        The week of the production and a week before my colonoscopy, I went to school feeling absolutely awful.  I was in orchestra when I realized I had to go home.  I had 5 trips to the bathroom that day already and was extremely lightheaded.  I asked my teacher if I could go to the nurse and then grabbed my sister to go with me to my locker to ensure that I wouldn't pass out while getting there.  I luckily didn't pass out but I did go home where I laid in the recliner and still felt like I was going to pass out.  My mom tried to feed me soup but I didn't want to eat.  It would make me go to the bathroom and be in pain. Finally my mom called my GI and they said to admit me to the hospital.  Well, I was admitted and they suspected some sort of IBD.  I eventually had a colonoscopy and they found Ulcerative Colitis.  When I left the hospital drugged up on prednisone and asacol, I had lost 15 pounds.
       That night was the opening night of West Side Story.  I actually felt up to seeing it so I watched the musical in the front row, seeing someone else sing my solo.  I made it up to myself by performing the next two nights.

        Fortunately, I went into remission for the next year and a half.  I was down to 4 asacol a day and feeling amazing.  However, I did get sick again. It was the week of my school's production of Noises Off! I had a lead but it was extremely stressful.  This was also following and extremely stressful production of Joseph and the Amazing Technicolor Dreamcoat.  I think the stress of both productions triggered my colitis out of remission.  I eventually went on prednisone again and higher doses of asacol.  After this didn't work, my prednisone was increased to 60 mg a day plus Imuran and an enema.  That summer, I went on a music trip to Europe.  I almost had to cancel because I was so sick but I opted to go.  Miraculously, I went into remission when I went to Europe but that only lasted 2 weeks.  I came back home and got sick again.  I had extreme moonface, irritability, and gained 20 pounds of water weight.  I had such low self esteem going into my senior year which is supposed to be one of the best years of your life.  Here are some comparisons of what I looked before and after moonface in a difference of only 3 months:

                           
 
                      

                                                                                               

      Eventually I got so sick that I had to be hospitalized during the rehearsing months of the production Guys and Dolls.  This year, however, I could not miss the opening night because I was the lead. I was also known as the girl who was always hospitalized during the musical.  Great record.  Also,during the colonoscopy, they found some abnormal cells in the lining of my colon.  I would have to get another colonoscopy in the spring right after graduation to check for cancer.  I eventually went into remission just in time for opening night.  A month later though, I got sick again and was recommended for Remicade and suppositories.  This did put me into remission for a few months but it did come back.  After that, I never went into remission again.  I also had that colonoscopy and luckily I didn't develop cancer.   I was getting used to my disease, though.  I knew it would always be the worst in the morning and that healthy food only made things worse.  The irony of that situation, though, is that I decided on Nutrition to be my major at college, probably because I missed healthy food so much.  That fall I went to college.  I did everything all college kids do, except with UC symptoms.  My stats class was at 8 every morning, and every morning, about half way through that class, I would leave for about 15 mins to go to the restroom for my stomach aches.  I'm amazed I got an A in class considering that I missed so much of it.

      That fall, I also realized that I had an allergic reaction to the remicade.  I started getting a rash right after my last infusion.  So, we had to find some other alternative.  Next came Humira.  Humira is horrible.  I used to dread the night I would have to shoot up some humira.  It's some of the worst pain I had ever been in. But, of course that didn't work either.  I tried alternative medicine like heavy duty probiotics or aloe vera juice but to no avail.  After having a consistent stomach ache for 4 hours, I decided I needed the surgery.  I was missing out on the college experience having to come home every weekend for humira shots or blood tests.  Plus, I was sick of being sick.  I needed my life back.  So, we made arrangements for my surgery this summer.  And at 19, I lost my colon and my disease.