journey began in 2005, at the age of 25, but with some clearer hindsight, I
truly believe it began in 1999 at 19 when I was a freshman in college. I was an
athlete (volleyball) and had taken anti-inflammatory medicine for a few months
for my knee. The doctors all thought that the meds had caused my stomach etc.
to be upset and the diagnosis after 2 scopes was acid reflux. I took Prilosec
and watched my diet (kind of...after all I was in college) and in 6 months I
was pretty ok. This cycle continued on and off for the rest of college, but
since I was one of "those" students who got good grades, had a social
life, a job, etc. the doctors asked what did I expect it's only a little
stomach ache. GRRRRR! But at 20-odd years old I hadn't yet started to question
the "experts". I graduated
with honors from Cal
and began teaching special education. I
was happy and healthy.
Health wise things remained uneventful
until June 2005. I was taking graduate
classes through Gannon
University in the
summer. I was sitting in class during
lecture and felt the worst stabbing, shooting, agonizing pain of my entire life
in my butt cheek. Turns out the discomfort I had been feeling for the last few
weeks, and until right then, had chalked up to a 5k a recent fall was actually
a peri-anal abscess that had ruptured. OUCH! Over the next 13 months, I had 5
surgeries to repair the area. Crohn's Disease was mentioned, but because I
didn't present with any other characteristics or symptoms, it was ruled out.
I had about a year and a half of
relative good health. I say relative because I was clueless that it wasn't
normal to eat up to 20 Tums a day and not remembering the last time I had had a
solid BM. Who discusses these things? It's just not polite conversation! In
that year and a half, I met my (soon to be ex-) husband and got married. In
2008 I moved from Pittsburgh to Alexandria, Virginia.
For the few months before I got married, I was experiencing Crohn's like
symptoms, but had wrongly attributed it again-this
time to pre-wedding jitters, anxiety about moving, worrying about finding a
teaching position, etc. etc. etc. I erroneously reason away the symptoms. It turned out I was about to get bitten in
the butt again-literally. Three days upon returning from the honeymoon, I was
in the ER with another ruptured peri-anal abscess. The next few months I spent
looking for new doctors, having every possible test done and basically being
poked and prodded in all areas.
I was officially diagnosed with
Crohn's on December 21, 2009. I started Remicade in January 2010. My health
continued to deteriorate. I started with
regular intervals (most patients receive IV infusions every 6-8 weeks) but it
wasn't enough. In order to get my Crohn's under control, I started getting double
doses every 4 weeks. In April 2010, I
had to take a leave of absence from teaching and go on disability because I was
so debilitated from my illness. It was beyond awful. I went from being the
chairperson/lead teacher of the special education department at my elementary
school to not being able to get out of bed except to throw up or to run to the
bathroom. On a side note, my soon-to-be-ex-husband never accepted my diagnosis.
Shortly after we were married, he became physically and emotionally abusive. I
honestly believe this also had a significant impact on my health and my Crohn's
Disease. I separated from him and we are in the process of getting a divorce.
All told, I've had 10 colo-rectal
surgeries and countless endoscopies, colonoscopies and other minor procedures. I stopped taking Remicade last June because
of the adverse effects it had on my immune system. I was unable to fight infection without the
help of heavy-duty antibiotics and steroids.
I had a throat or sinus infection every month from April until
September. I did not respond adequately
to traditional treatment plans so I elected to try research studies. I participated in a clinical research trial
in last fall. It was amazing! One shot in my belly and I had some symptom
relief for about 4 weeks in October. In
November, my symptoms began to return and by January, I was in a full-blown
flair. Presently, I am enrolled in a
different clinical research trial. I receive IV infusions every other week in Chevy Chase, Maryland. I’m not sure if I am receiving the medication
because it is a double-blind study. Dr.
Hardi and Laure have my full confidence and trust. I am so thankful to have a wonderful medical
team taking care of me.
I am extremely blessed to have the love
and support from my Mom and Dad, Travis, and my Gram. I don’t know where I would be without
them. I am very grateful to have the
support of my loved ones and friends. I
am still not feeling well and most days are a huge struggle. Thank
you for your support and sharing my journey, I don't feel so alone.
tough, but I’m tougher!
On June 10, I will be walking in the Take Steps for Crohn's & Colitis
Walk. Take Steps is CCFA's national evening walk and celebration and the
nation's largest event dedicated to finding cures for digestive diseases. It is
a casual 1.5 mile stroll to raise money for crucial research, bringing us
closer to a future free from Crohn's disease and ulcerative colitis. Over 1.4
million American adults and children are affected by these digestive diseases.
While many suffer in silence, Take Steps brings together this community in a
fun and energetic atmosphere, encouraging them to make noise and be heard.
Your donation will help support local
patient programs, as well as important research projects. This cause is very important
to me and I appreciate your help as we fight for a cure! In addition to
donating, you can join me at the event. There will be food, music and kid's
activities. The more money we raise, the closer we will be to making life more
manageable for patients who live with these diseases every day.
Please join me or donate to my efforts
to support CCFA in finding a cure!