My name is Juliana. I am 16 years old. I was diagnosed with Ulcerative Colitis at the age of 14 on my birthday in 2010.
My Ulcerative Colitis Experience:
Hi, my name is Juliana. I am now 16 years old and was diagnosed with UC on my 14th birthday, August 30th, 2010. At first, everything slowly crept up on me. I had no clue what was going on and was very scared. I was missing school and just wanting to lay in bed all day. I couldn’t eat much, it would give me the worst stomach pain and i would be running to the bathroom. Finally i told my dad, something is NOT right. He brought me into the ER the night of my birthday, and i remember sitting in the ER room until 1:30 AM . Finally they transferred me to a different hospital and admitted me.
The first thing the doctors did was put me on oral medicine, and it worked… at first. I was taking tons of pills everyday just to get thru the day. Then all of a sudden they just didn’t work for me, so i saw myself in a flare up and back in the hospital. Then they tried Remecaid. That worked for about 14 months. I was coming in every 7 weeks to get a remecaid infusion , then it started going down hill. I was only making 6 weeks , then 5, then 4, and so on. At the end i was barely making it a week after getting the rememcaid infusion finding myself back in another flare up.
I had 2 options, i could either try humira which they said would just be another band-aid cover up and they didn’t know if it would work or not. Or i could get surgery. Being only 16 years old, surgery was a BIG deal for me. I was terrified.
I sat down with my family and talked it out and decided to do the surgery.
I was terrified going into the waiting room
right before my surgery.
Luckily both my mom and dad
were there to calm me down.
And before I went into the surgery room for 6 1/2 hours, the nurses gave me a little thing of red juice that is supposed to calm you down but it also makes you not remember a thing before time. So the next thing i knew, i woke up in the recovery room. I was really sore but they gave me tons of medicine to feel comfortable.
Having the colostomy bag sucked.
I hated cleaning it all the time
but i was anal about it being really clean.
The good thing, I never had to rush to the bathroom , I could just go to the bathroom whenever I wanted. And sometimes it made a farting noise that i couldn’t help, and i would just break out in a smile. (:
Only 3 weeks later, i had the colostomy take-down, which is where they take the bag off. I was so excited to get it off and that it was so soon. So i went thru my second surgery on December 30th, 2011. For that surgery I wasn’t as half as nervous as I was the first, so i told them i didn’t want the red juice and that way i got to see the surgery room and remember everything before they put me out. After that surgery i wasn’t as sore as the first either but they still had medicine to make me feel comfortable.
Getting to go home 3 days later, i could basically start a whole new healthy life. But come end of January of 2012, i lost my appetite completely. I didn’t eat for a week and barely drank anything.
Finally my dad had to bring me back to the ER
and i found myself in the hospital AGAIN!
I ended up finding out that i have pouchitis,
which is an infection of the J pocket .
I am now sitting in the hospital writing my story of UC getting pumped full of anti-biotics trying to heal me and get me back to that healthy life.
So there’s my story, if you have any questions don’t be scared to ask. I’m here to help anyone. Thank you. Have a nice day. (:
Medications that have worked the best for me is probably rememcaid, even though it only worked for 14 months, when it did work i felt good. All the oral medicines to me were a waste of time, but then again you never know, every person is different.
written by Juliana
Submitted in the Colitis Venting Area