Hi, I'm Ashley and I'm 23 years old. In the past two years, I graduated college with a degree in Accounting and Psychology, earned my masters degree in Accounting, started a full-time job, had five hospitalizations, two surgeries, and countless needle pricks and medical tests. I have Crohn's Disease and am passionate about spreading the word on my illness and sharing tips and tricks I have developed over the years.
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Prednisone, Surgeries, Vegas, Oh My!
I like to think of myself as a holistic person. If there
is a natural remedy for an issue I experience, I prefer that to any
pharmaceutical drug on the market. Unfortunately, my disease has progressed so
rapidly and severely that I have been left with no choice but to jump on the
dreaded bandwagon of the despised drug that is Prednisone.
Back in 2012, I tried the steroid for the first time
in an attempt to combat a flare. I resisted Prednisone up until that point
because of all the side effects and horror stories I had read online and in
medical journals: insomnia, agitation, increased sweating, acne, insatiable hunger,
weight gain, moon face, mood changes, dry skin, decreased immunity, and the
list goes on. My pediatric gastroenterologist at that time was insistent on the
idea of me giving the drug a chance, as it is the first line of defense when a
Crohn’s Disease patient is experiencing increased disease activity.
Hesitantly, I agreed to start out on a moderate dose
of 40mg daily. Long story short, I did not feel like myself on the drug and
within a few days I ended up in the hospital for recurring episodes of syncope
(I would more or less pass out every time I stood up) and extremely low blood
pressure. Needless to say, I steered clear of Prednisone for as long as I could
after that experience.
Flash forward to December of 2015 and I am faced
with the dreaded decision again: take Prednisone to alleviate my severe
symptoms or resist the treatment and hope for the best. I had already tried
Entocort (a steroid loosely comparable to Prednisone that does not cause the
dreaded systemic side effects) to no avail, and my flare was worsening daily.
At this time, the Erythema Nodosum on my legs was so
severe that I flew home early from my family vacation. I could not walk and was
running a 103 degree fever; my gastroenterologist immediately admitted me as an
inpatient to the hospital. In consideration of the numerous recommendations
from multiple doctors on my medical team, I conceded to their suggestion and started
an intravenous course of steroids on New Year’s Eve of 2015. Thankfully, within
less than forty-eight hours my legs were significantly less swollen and
painful, and my fever had broken.
After a week in the hospital taking prednisone intravenously,
I was discharged and instructed to follow a five-week steroid taper starting at
40mg daily. Because I had not experienced any severe side effects while on IV Prednisone
(much more powerful than the oral dose I would be taking at home), I was
hopeful that maybe it was a miracle drug after all. I could live with the night
sweats, insomnia and mood swings it caused, so long as my flare was controlled.
I chalked up my experience in 2012 to be a fluke and was optimistic about
coming out of this flare in no time!
By the end of January I was in the hospital again,
this time for emergency surgery to remove an abscess. I was running a high
fever and was in extreme amounts of pain. I suspected that the abscess had
formed because of the Prednisone (I did a lot of research on the comorbidity of
abscesses/fistulas and immunosuppression relating to corticosteroids), but this
could not be confirmed by my doctor or surgeon because abscesses can occur as a
result of Crohn’s Disease in itself.
I recovered quickly from that surgery and maintained
on Humira injections after the Prednisone taper finally ended. My typical
disease symptoms (stomach pain, fevers, joint pain, fatigue, rectal bleeding, urgency
to go to the bathroom, etc.) were not fully under control, but I was better off
than where I was back in December and January. As I was approaching the end of
my final semester in college, I was optimistic that I would be in remission by
the time I graduated; unfortunately, that is not exactly what happened.
I finished my courses, took my finals, and ended the
semester with a 4.0 GPA. To celebrate my accomplishment of graduating, my
parents took me on an amazing vacation
to Las Vegas. After having to leave my family vacation in December because of
my flare, I was nervous that I would get sick again and have my trip ruined. Leading
up to Vegas, I was in okay health and convinced myself to push any doubtful
thoughts out of my mind.
My vacation with my parents was full of fun and excitement.
Anyone who knows me personally knows that my parents are my best friends and
favorite people and I always have the best time when I am with them. I did not
have a great year as a 21-year-old in light of my ongoing flare and multiple hospitalizations,
so I was ready to make up for lost time on vacation. I gambled for the first
time (ended up winning- yay!), went to night clubs for the first time (and the
VIP opening of Jewel at the Aria), and even enjoyed a few alcoholic beverages
(I am not a huge drinker, but I was in Vegas so of course some I had to seize
By the third day of the trip, I could not walk. I
initially thought that I had pulled a bunch of muscles in my legs from walking
around so much in heels and over-exercising. After a few days of worsening
pain, I realized that I had a bigger problem on my hands: my Erythema Nodosum
had returned, worse than before. What had happened to my body in Vegas was unfortunately not something that could stay in Vegas.
I came home from Vegas and immediately started Prednisone.
Within two days, I could walk without pain again. The only side effects I was experiencing
from the steroid were insomnia and the occasional sad mood. My legs cleared up
pretty well and I was back to my regular routine in no time.
But not so fast. Two weeks later I suspected that I
had developed another abscess and this time, a fistula as well. And to top
things off, I was supposed to start graduate school (I am earning my master’s
degree in accounting) that week. I scheduled urgent appointments with my GI and
my surgeon who both confirmed my suspicion. I was booked for surgery the next
I will write about that experience at a later time,
but for right now, the takeaway is that immediately after taking Prednisone I
developed an abscess, just as it happened in January, and this time with a
fistula as well. My surgeon agreed that the Prednisone is what caused the abscess
and new fistula to appear. Not great news.
Moreover, because I was having surgery, I had to
delay my Humira injection, which I suspect caused my Erythema Nodosum to reappear
later that week. This was the fourth time I had experienced it and the pain was
so awful that it woke me up at night. Each day the pain and swelling got worse
until I could not walk and my doctor admitted me to the hospital to start IV
steroids yet again.
Within a day on the IV steroids, my legs were
significantly less painful and swollen and I was able to function again. I was
discharged on a 40mg taper of Prednisone. (It was also at this time that I increased my Humira injections to a weekly dose and added in Azathioprine as a
My awesome sister Lauren always makes me 'Welcome Home' signs after a hospital stay <3.
As of today, I am down to 25mg daily on my steroid
taper and mercilessly hoping that the pattern of Prednisone-abscess-surgery
does not recur. The unpredictability of my disease is what hits the hardest for
me because I know that tomorrow I could wake up to notice an abscess or fistula
and my life will be turned upside down. This plays into the concept of involuntarily
living in the moment that I wrote about here.
On this taper of Prednisone, I am really feeling the
side effects: I cannot fall asleep or stay asleep at night; my hands shake a
few hours after taking my dose in the morning; I am getting zits on my forehead
(I normally have perfectly clear skin); I am extra thirsty; my energy levels
are either extremely high or too low to function. With each step down on the taper,
these side effects change, and all I can do is hope that they stay manageable.
It is saddening to me that there is not a better
treatment option for Crohn’s Disease when a patient is having a flare. Maintenance
medications are great for maintaining remission, but getting to that point has
been a struggle for me. With an increased focus on my health and nutrition as
well as an increase in Humira dosing and the addition of Azathioprine, I hope
that I will not need to take Prednisone again anytime in the foreseeable future.
For now, I will maintain a positive attitude and stay optimistic that this
taper will not result in another surgery. www.ashleyesper.com
*This post was recently published on The Mighty, read that version HERE! Here are some words
that may help you recognize the good that can come from whatever it is you are
currently struggling with.
As I’ve said before, having a chronic, incurable disease can
really change a person. For worse or for better, that is the very true reality
of what I have experienced through living with my Crohn’s disease.
It is easy to write about the horror stories that accompany
this disease, and even easier to let those memories dominate my opinion on what
the illness has done to my life.
Something I have been thinking about a lot lately is if I
would take the opportunity to give back or undo what my disease has done to
shape my life and my personality.
The short answer is no.
For all the opportunities lost, pain felt, and tears shed, I
have evolved from my experiences in life-changing ways. With every flare-up,
hospital stay, and health setback, I become more resilient, mature, and
*This post was published by The Mighty, you can read that version here!
An overwhelming theme being emphasized this year is self-love. This is such a great concept and is so important. In the age of social media, the intensification of the importance of outward appearance is at an all-time high; this is why the self-love movement started in the first place. Loving oneself may seem like a simple thing to do for those who have never dealt with body image or self-esteem issues. But for those who fall into the deadly trap of comparison and perfectionism, truly loving oneself can prove to be much easier said than done. Negative body image and self-esteem are significant enough on their own to impede anyone’s ability to love themselves. But there is another factor to throw into the mix for those who deal with an autoimmune disease or any type of destructive chronic illness: how can we love our bodies if our bodies do not love us? An autoimmune disease is “an illness that occurs when the body ti…