A Picture’s Worth A Thousand Words: My Visual Journey With Ulcerative Colitis

Body image is not the first thing that comes to anyone’s mind when thinking about ulcerative colitis. Given the fact that UC is such a physically debilitating disease, the superficial side effects that come with it are often overshadowed.
The truth is, dealing with UC often results in many changes to our appearance, and it’s never easy to watch our bodies morph so quickly when we don’t have any control over them.
For those currently struggling with a flare up, I thought it would be helpful to see what my journey with UC actually looked like.  I’ve chosen a variety of photos that depict where I was and how I felt throughout the different stages of my disease.
Happy and Healthy
I’ll begin with my wedding.  I was marrying Mike, the man of my dreams, and life was so good.  I was happy, I was healthy, and I felt a great sense of optimism and hope for what the future would hold for us.

Our wedding day, October 13th, 2007

Later, when I was sick, I would look back at this photo often, hoping that I would one day feel this happy and healthy again.
The Flare Up Begins
Mike and I took a 10-day camping trip up the East Coast the summer after we got married.  I remember this time period like it was yesterday because I was struggling with the start of my UC flare up.

Skinny and unable to eat on vacation

This photo was taken at a restaurant on the last night of the trip.  Even though I don’t look sick here, I wasn’t able to eat anything that night, and I see that I had already lost a lot of weight.
I was scared, uncomfortable, and had no idea that things would only get worse.
In The Hospital
A few months later, I found myself in the hospital.  It was the first of many stays at Mt. Sinai Hospital in New York City.  I was having diarrhea up to 40 times/day and I was extremely anemic from all of the blood loss.
I was scheduled for an emergency blood transfusion (I wound up having two) to bring my blood counts back up.  I received my first doses of intravenous Prednisone to reduce the inflammation in my colon and bring me some immediate relief.

We spent our 1st Anniversary in the hospital

Mike was by my side, as always, throughout the entire ordeal.  It was also our 1st wedding anniversary, which we “celebrated” in my hospital room.
Halloween 2008
Halloween was a few days after I was released from the hospital.  I guess it was somewhat ironic that Mike and I dressed up as Mary Kate & Ashley Olsen because I had lost 15 lbs and looked like I hadn’t eaten in weeks.

Mike and I dressed up as The Olsen Twins

Mike again proved to be the best husband on earth as he let me polish his nails with black nail polish, just like an Olsen twin!
Hiding Behind A Wig
It took several months after my stay in the hospital to taper off of the Prednisone.  I was finally feeling a bit better, but the side effects were taking a toll.
My face was starting to blow up and I actually started growing hair, in patches, on my head and face.
The hair growth was particularly difficult for me because I had already grown accustomed to not having any hair.   I was diagnosed with alopecia areata when I was sixteen years old, and had spent years mourning the loss of all of my hair.
Now, I was forced to shave my head every morning to remove the stubble that grew in each day. My self confidence was tested with every shave.

A wig brought me comfort

On a few occasions I actually went out in public wearing a wig, which was something I never did aside from the annual Halloween party.  It felt like a simple way to cover up and hide from the reality of what I was facing every day.
Coping With A “Moon Face”
This photo haunts me because it looks like my face might actually pop!  I was swollen like a red tomato (“moon face”) and my cheeks blocked my vision when I looked down.

The “moon face” was a side effect of the steroid drug Prednisone

I was back in the hospital, this time with PCP pneumonia, a rare (and sometimes deadly) form of pneumonia that I contracted because my immune system was so compromised from the long term use of steroids.
To this day, I don’t know how I got through this awful time in my life.  I couldn’t even recognize myself in the mirror.
I remember crying to my husband and my sisters that I felt like I was literally in a nightmare.
A Skinny Selfie
The yo-yo weight loss and weight gain had taken full effect.  I was off of the Prednisone but wasn’t able to tolerate most foods and had lost 15 lbs again.

Skinny and pale after losing 15 lbs. again

Every day, for every meal, I was eating boiled chicken and white rice.  That was it.
It’s crazy to think about how imprisoned I felt – trapped in a body that really couldn’t function normally.
Hiding Under A Hat
I was back on the Prednisone hoping to find some relief in my colon, but my face was blowing up and the hair was coming back again.

My amazing friends made it a little easier

I wore a hat for a few weeks, just to cover up everything that was making me so insecure.
My husband, my family and my friends were extremely supportive during this horribly uncomfortable time in my life.
My Cousin’s Wedding
This photo was taken at my cousin’s wedding in New York City.  It was one of the most gorgeous weddings I had ever been to – and it was especially humbling for me because I was asked to read a passage at the ceremony.

Swollen and uncomfortable at their perfect wedding

It also goes down as one of the toughest nights of my life because I was so utterly self conscious and just in so much physical pain.  I remember having trouble standing up and actually borrowing a painkiller from another guest at the wedding.
I look at this and can’t even believe it’s me (especially next to my gorgeous cousin).
My Body Before Surgery
Six more months of battling UC was all I needed to finally make the decision to have my colon removed.  I had had enough – and I was ready for a fresh start in a comfortable body.

Pointing to the spot where I would soon have an ileostomy.

I took this photo the night before my surgery.  My doctor had marked up where the incisions would be made and I knew it was the last time I would see my body unscarred.
I am smiling here, but I was scared out of my mind.
Post Surgery Glee
What a difference 24 hours can make!  Here I am, post surgery, no colon, and ALREADY feeling better!

Just hours after my surgery

It took me several years to make the difficult decision to have this surgery, and it turned out to be the best thing I ever did for myself.
I’m Back!
One year later and I had my life back!  Happy, healthy, and on vacation with the man of my dreams.