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Personal Story

Why It’s Okay to Grieve the Loss of Your Colon

Brooke Bogdan discusses how she channeled her grief and uncertainty after having a total colectomy into a mind-set that would help fellow UC patients and herself.

When you’re diagnosed with a chronic illness like ulcerative colitis (UC), it’s important to be in touch with not only your body and how you feel physically but also how you are coping mentally. Before my diagnosis, I had never heard of inflammatory bowel disease. But at the age of 22, I began experiencing sharp stomach cramps and noticed blood in my stools. When I learned that I had UC,  it was a shock to my system. The physical pain became so unbearable that I had to quit my job and move in with my parents. Mentally, I was suffering, too. All of the dreams and hopes I had for myself after college seemed to dissipate before I could even begin achieving them. For almost two years I was chained to the bathroom, stressing about the next flare and fretting over not being able to live the life I wanted.

I soon learned that in order to be able to handle the physical pain that came with my UC, I had to gain control of my emotions and stress. I started seeing a therapist to help me cope with my feelings of sadness and to better understand why I felt so out of control.

My therapist taught me how to start channeling my emotions in a healthy way. By doing so, I was able to begin grieving the loss of my life pre-diagnosis. Grieving my health was a concept I’d never thought of at 23 years old. But once I started thinking more about it, it made sense. My old life wasn’t feasible for me anymore. I couldn’t keep up with my friends or my sisters. I had to accept that my future would forever be different from my peers’.

Just when I thought I had mastered grieving, my health started to rapidly decline. By March 2013 I was bedridden and unable to leave the house. I was going to the bathroom between 60 and 70 times a day and losing copious amounts of blood. Because of the severity of my disease, I was put on home healthcare and was having blood work done weekly. Blood work showed that my CRP (c-reactive protein) level was dangerously high. (CRP is produced by the liver. Its level rises when there is inflammation in your body.) This meant that the inflammation in my colon was at a high enough level to perforate my bowel, which put my life in serious danger.

My parents took me to the Cleveland Clinic to meet with a surgeon who was adamant about removing my colon as soon as possible.

When I heard those words I began to panic. My body was shaking uncontrollably, and I started to scream and cry. I never wanted to wear an ostomy and at the time had read only negative things about having one.

The surgeon left the room to give me a moment to compose myself. I looked at my parents through tears and yelled, “I won’t do this. I refuse to go anywhere wearing that bag.”

My dad, a physician himself, sat directly in front of me. “You need to calm down. We’re all going to do this together. Surgery is the only option left other than losing your life.”

I grabbed a handful of tissues and took a few deep breaths.

When the surgeon came back in we went over the procedure I was about to undergo. A total colectomy, the first step of three operations I would have, was scheduled for three days later.

When I returned home that afternoon, I was full of anger, sadness, fear, and confusion. I didn’t understand why this was happening to me. I had already missed out on so much because of my disease, and now it was depriving me of my own body parts. I was afraid of the future and didn’t know how I was going to live life post-surgery.

I had to quickly find a way to wade through my grief and negative thinking. I knew that in order to conquer all of this, I was going to have to turn my thinking in a more positive, constructive direction.

So I used the tools that my therapist had taught me. I looked for inspiration in others and reminded myself to take time to process my emotions. For me, that meant educating myself by reading books and turning to social media and blogs.

That afternoon, I must have found over 20 inspiring women online, all who had permanent ostomies and were living happy and healthy lives: Gaylyn Henderson of Gutless and Glamourous, Jessica Grossman (and others) of Undercover Ostomy, the Girls With Guts website and forum, Heidi Skiba of Ostomy Outdoors, and Sara Ringer of Inflamed and Untamed. Discovering individuals who shared a diagnosis with me and watching them live their lives productively and positively was a turning point in my journey with ulcerative colitis.

My grief process took a new turn. I realized I had two choices: I could sit and feel sorry for myself for the next year while I was going through surgeries and learning how to live with an ostomy, or I could get up, challenge myself, and find a way to help those who were just as confused and scared as I. So I took my grief and turned it into something productive. I wanted to help myself by helping others. I wanted to inspire people the way those women inspired me.

Read full story here.

Posted on: September 25 2019

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