What does ulcerative colitis mean to me?

During the fall of 2006 my health began to deteriorate at a rapid pace.  I felt ill nearly every single day, but had no idea what was the matter with me.  I was constantly fatigued and constantly going to the bathroom.  On November 15, 2006 I had a colonoscopy that revealed I had ulcerative colitis.  Before I was diagnosed with UC, I had never heard of it before.  It didn't take long for me to become acquainted with it.

On November 17, 2006 I was hospitalized for the first time in my life.  (Except when I was born, they decided to keep me overnight then.)  I had a fever, constantly needed to use the bathroom, and had ever-present pain in my belly.  It was so unbearable that I couldn't get better without the help of being in a hospital. 

I ended up spending 24 of the next 25 days in two different hospitals.  While in the hospital it was assumed that I would get better once I was placed on IV steroids.  That simply didn't happen.  Instead of getting better my health only became worse.  On December 4, 2006 I was transferred from Saint Anthony's Medical Center in Rockford, IL to Rush University Medical Center in Chicago, IL with the understanding that I was going to have my colon removed. 

Upon arrival, the surgical team confirmed that I needed surgery and because of the dire state that I was in, they wanted it done as soon as that afternoon.  They informed me that they would wait for the GI doctors to see me first in order to receive their recommendation.  The GI team decided to treat me with cyclosporine.  If the cyclosporine was unsuccessful then I would be left with no other options than to have my colon removed.

Within a couple of days the cyclosporine began to work, leaving me feeling much better.  On December 11, 2006 I was released from the hospital and sent home to sleep in my own bed for the first time in nearly a month.

Once I left the hospital I was on a steady diet of medication for the first time in my life.  I was taking over 30 pills a day in order to keep my ulcerative colitis under control.  I hated taking medication, just having to remember it was a huge annoyance, but I was determined to do whatever it took to never feel that sick again. 

Although I never felt great, the pills were able to maintain my health from being extremely ill for a period of a couple months.  However, that stopped being the case when I was once again hospitalized in March 2007.  I had been tapering off the steroid medication prednisone for several months and was now put back to a higher dosage in order to stabilize my health. 

I once again was feeling simply okay.  Not bad, but not good either.  In May, after once again tapering down on prednisone, my health was in decline.  My dosage of prednisone was again re-upped and I was introduced to a new drug:  Remicade.  Remicade is an IV infusion medicine that is administered every 8 weeks. 

The Remicade seemed to be doing the trick until I had been completely weened off of prednisone.  I was so excited to be off prednisone because of the enormous amount of side effects that it caused, that I no longer wanted to be put back on it.  This caused a problem as there was really no other medication that I could turn to in order to regulate my colon. 

I was hospitalized again in August 2007.  The hospital staff attempted to administer IV steroids to me to which I informed them that I didn't want to take them.  They instead gave me a double dose of Remicade to see if that would help; it did not. 

Within a couple weeks of being released from the hospital it was apparent that nothing would work for me.  I went and saw a GI doctor in Rockford who confirmed my fears that I needed surgery.  He discussed this with my GI doctor from Rush and they both agreed that surgery was my only option at this point. 

I was incredibly frightened at this possibility, as I had done all I could for months trying to avoid surgery.  I felt as if it was my fault because I had failed to keep myself healthy and now I had to suffer the consequence of losing my colon.  This was the absolute last thing that I had ever wanted to have happen, but i realized at this point that it was a necessity, I was never going to get better without having my colon removed.

On October 4, 2007 I had surgery to remove my entire colon and rectum.  I was left with a temporary ileostomy as a way to expel waste from my body.  I hated everything about the surgery.  It was extremely hard on me physically, but even tougher emotionally.  I hated the physical changes to my body and I had a hard time accepting them as reality.  I was pooping into a bag, that's not something I wanted to believe was really me.  I was supposed to be normal and this wasn't normal.  I was depressed and wasn't sure if I had made the right decision by having surgery.

I wasn't happy, but had no choice but to persevere.  My number 1 apprehension about having surgery was the finality of it, there was no turning back after having surgery, and instantly I was regretting it.  As the months went by I became more and more accustomed to using an ileostomy.  It was easier to accept it as I knew more of what to expect from it.  I still wasn't happy about it, but as time went on I began to realize it was something that I had to go through to get to the ending I wanted.

On January 16, 2008 I finally got the ending that I was hoping for as I had surgery to have my ileostomy taken down.  I am now able to go to the bathroom just like a normal person.  It was such a relief to look down at my stomach after surgery and not see a bag full of poop sitting on it.

After a couple months since having my second surgery I am feeling much better.  Colitis is still a painful memory in my brain, but I am determined to erase the pain it caused me by proving that I can carry on with my life as if colitis never happened. 

Colitis put me through almost a  year and a half of pure hell.  I am determined to put an end to colitis and move on with my life.  Colitis may have set me back in life, but I will not allow it to hold me down anymore. 

In a word, colitis is a punk.