#WorldIBDDay: Taylor’s story

I am new to the IBD community, but far from being new to UC symptoms.  For almost 4 years I struggled with flare ups and symptoms that severely impacted my quality of life.  I missed out on so many opportunities because my disease was unpredictable and would hold me back.  Doctors failed to diagnose me with anything more than IBS, and told me I was simply going to have to manage my symptoms.  I was forced to become really good at hiding how I felt since I wasn’t receiving the medical attention I needed.  No one around me ever really knew what I was going through.  In all honesty, I didn’t want to believe there was anything wrong with me; I was scared of having a medical condition.  It was not until two months ago, when my flare up became unbearable, that I told myself there IS something wrong and I finally got the real answers I needed.

I spent over a month telling myself that this time was just another bad flare up, and that it would soon pass.  But when I was staying home from class, not making it to work, and eventually not even leaving my bed, I knew this was no flare up like I had ever experienced.  I explained to my mom how severe my symptoms were becoming and she made every effort she could to get me the help I needed.  We went to Mayo Clinic in Rochester, MN and after long days and endless tests I was diagnosed with Ulcerative Colitis.  I also found out that my UC caused me to become severely anemic (my iron levels were down to a 9, when the average person should be around 135).  Something that will always stick with me is when the doctor came in after my endoscopy/colonoscopy, the first thing he said to me was, “you really are sick, extremely sick.”  The look in his eyes and the tone of his voice hit me like a tidal wave.  I knew how sick I was, I could feel my body deteriorating and quickly becoming weaker.  But this was the first time a doctor finally understood everything I had been telling the others for years.  My pain was finally no longer being seen as something that could be “managed.”

But even after hearing the bad news, I actually felt relieved.  I struggled so long with an underlying disease that doctors failed to diagnose correctly, but I knew now that I would receive help and medications that my body truly needed.  I started receiving iron and steroid infusions immediately.  When I returned home from Mayo Clinic, my symptoms were persisting and I had to be admitted into the hospital.  I spent what felt like the longest week of my life under doctors care.  The week I was in the hospital showed me how serious my disease was attacking my body.  I hated being in the hospital but I was scared to be discharged because I did not want to be left in terrible pain anymore.  When I got home, I did everything I could on my own to heal my body from the inside out, even if it meant putting the rest of my life on hold.  Slowly but surely I was gaining control of my body.  I was gaining my life back.

I now keep in close touch with my IBD doctor, and continue to receive infusions with the medication I need while fighting my battle every day.  There were too many times where I thought I would never feel better, and that my life lacked any sort of worth when my whole world revolved around my pain and urgency.  Even though everything that I have gone through for the last 4 years has been extremely taxing and draining, I am proud to say I have made it this far.  I used to feel trapped in my own body, but I am slowly gaining my confidence back.  I know I am still on my IBD journey and I have a long way to go, but it is truly remarkable when I think about the condition I was in compared to how far I have come.  My body is resilient.

Some special thanks are in order…  Mom, you are the reason I received the help I needed.  You put your life on hold for me for months, and I am forever grateful for the unconditional love you have shown me.  Alex, you did not leave my side once.  You are everything I have ever needed in someone.  The rest of my family, thank you for being there.  Without you, I would have lost my fire a long time ago.  I keep pushing on for all of you!

Taylor is a 20 year old UC patient and has been since she was 16.  She does not let IBD define her as she has continued to pursue her college degree despite her health struggles and setbacks.  Taylor is in her junior year at Southern Illinois University Edwardsville and plans to become a CPA.  She loves watching The Walking Dead, traveling, taking time to spend with her family and her boyfriend, and she is the best dog momma to her German Shepherd Rosie.