October 8, 2015

My Journey

My name is Shayna.  I am a 35 year old woman living in the Boston area.  I spend my days working as a second grade teacher in a small town outside of the city.  When I am not working you will find me with my friends and family enjoying beach trips, traveling, cooking, shopping, reading, attempting to be a runner, taking photographs, laughing, AND navigating my journey with IBD.

I have the Inflammatory Bowel Disease (IBD) known as Ulcerative Colitis (UC).  Ulcerative Colitis is a chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucous. The combination of inflammation and ulceration can cause abdominal discomfort and frequent emptying of the colon.  What information is left out of that definition, is that UC can be a very silent, private, embarrassing, and invisible chronic illness.  I was diagnosed with UC when I was 18 and a brand new freshman at the University of Massachusetts at Amherst.  I was so excited to go to college and be away from the small town I had grown up in.  Instantly I made great friends and pledged a sorority.  Life was fantastic and I really was enjoying my first year away from home.  But around November I can remember waking up one morning in my dorm and feeling awful.  I knew something was NOT right.  I had a fever, pain, I was running to the bathroom constantly, and my stomach was so distended even a light touch hurt.  I was so embarrassed by the never-ending diarrhea I didn’t tell anyone what was going on, not even my mom who is a nurse and who I always went to if something was wrong.  At one point after weeks of suffering I started to withdraw from everything.  I stopped going to classes because I couldn’t make it from one building to another without having to stop at a bathroom.  For the first time in my life my grades dropped and I just couldn’t keep up with the work.  I no longer wanted to hang around with my new friends and sorority sisters, and would spend my nights and weekends in bed watching TV or sleeping for an abnormal amount of time.  Only due to sheer desperation I finally told my mom what was going on.  Within days after telling her she had picked me up at school and I had an appointment with a gastroenterologist (GI) doctor and a scheduled for my first colonoscopy.

On the dreaded scope day I was scared and the awful and miserable prep medications didn’t help at all.  Luckily because my mom worked at the hospital where the procedure was being done they allowed her into the procedure room with me and she held my hand the entire time.  I remember being conscious and the doctor taking one look at my large intestine and announcing that I had Ulcerative Colitis.  In that moment my mind and the world around me went still.  I couldn’t hear what was being said.  All I could think was:  what is Ulcerative Colitis?  He must be wrong?  Not me!  At some point I looked at my mom and she was crying so I knew this couldn’t be a good thing.  We went home that day with some medications that I knew nothing about and started to research IBD.  At the time there was very little information about the disease and the options for treatment were scarce.  I can remember sitting with my mom and making her promise not to tell anyone about my illness, not my grandparents, my aunts, cousins, sister, or friends.  I felt embarrassed because I had already convinced myself that I had caused this and it was my fault that I had this disease.

Over the next four years of college I spent most of the time trying to hide my illness from roommates, friends, and professors.  If I was sick instead of calling the doctor or letting a professor know that something was going on I just stopped going to classes.  I would shut out friends when I was sick and sometimes just go home without telling anyone.  I didn’t take my medications responsibly and truly believed I could live without them.  It was extremely difficult to live the life of a college student and manage a disease that I knew nothing about and wasn’t willing to accept.

Finally after years of failed medical treatments and many, many hospitalizations we reached the point where surgery was the only option.  In 2004, at 24 years old, I underwent major surgery to remove my colon and create an internal pouch called a J-Pouch.  A J-pouch is an internal pouch to hold stool that is created from the last part of the small intestine (ileum) and attached to the anus or the remainder of the rectum. The terminal ileum is sewn back onto itself to form the shape of the letter “J.” This pouch functions as a replacement for my large intestine.  This surgery was done in two separate stages and during the first stage I received an ostomy.  An ostomy is a surgical procedure, in which an artificial opening is made to permit the drainage of waste products outside of the body.  The recovery from this surgery was extremely difficult.  I felt very alone and as though I had no control over my body.  This external bag was not an easy thing to deal with as a 24 year old female.  I felt so different from my friends and was envious of how different their lives were from my own.  BUT with the support of my family I made it through and after 13 weeks the second stage of the surgery was performed, my ostomy was reversed and my J-Pouch was connected.  Surgeons and doctors told me that these surgeries would CURE my disease and I was so excited to start living my disease free life.  Years later I found out that this statement about being “cured” was sadly not true.

In the past ten years, since my original J-Pouch surgery, I have undergone five other surgeries, been hospitalized more times than I can count, developed a chronic medical issue called Pouchitis, taken many medications with terrible and unknown long term side effects, been forced to go on short term disability for months at a time, and suffered from extreme pain and diarrhea because of this unremitting illness.  During my last surgery my doctors found that I also suffer from endometriosis.  Endometriosis is a condition resulting from the appearance of endometrial tissue outside the uterus that causes pelvic pain.  This diagnosis is very new to me and has now become part of my journey.

My illness is part of me every day.  I wake up with it, I eat with it, I work with it, I socialize with it, it comes on vacation with me, I go to sleep with it each night, and because this I have had no choice but to accept it and embrace MY life.  Over the years, I have learned that sharing my story is a gift.  As I opened up about my illness, I was accepted by friends, family, and even strangers who could relate because they knew someone with IBD or had IBD themselves.  I have had the opportunity to share my story with people who are newly diagnosed and I truly know how important it is for them to hear that I understood exactly what they were going through and that I survived.  It is my goal in life to continue the conversations about this very invisible illness and to advocate for myself and for the people who just aren’t ready to speak up quite yet.

I live an incredible life with my boyfriend, family, and friends.  I continue to work at what I believe is the very best job in the world as a teacher.  In spite of this illness I have done so many things…received my Master’s degree and CAGS degree, traveled all over the United States, purchased my first home, and laughed each day with the people whom I love the very most.  There were days where I believed none of this was possible, each day is hard but I AM a survivor, a fighter, and I AM stronger than I ever thought I could be.   I hope you will continue to read about my journey and begin to share your own.  When were you diagnosed?  Are you able to share your journey with others?

Xoxo, Shayna