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Why I'm So Thankful for My Ostomy

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When I was diagnosed with ulcerative colitis in 2010, the only thing I felt was embarrassment. I was embarrassed to be so tired all the time, embarrassed to have my first colonoscopy in high school, embarrassed to go to the bathroom and only see blood.

woman in a hospital bed and gown

I’d experienced my symptoms for years before my diagnosis, but after my week or two stay at Levine’s Children’s Hospital, it was official. Ulcerative colitis. I knew nothing about my illness and frankly, at 17, ignorance was bliss. Emergency rooms and hospital stays led me to believe that taking Prednisone would solve all of my problems. The “Holy Grail” of IBD, right? Wrong. Years of continuous steroid use passed and I started noticed my health decline. Quickly. My “tired” turned into exhausted. I was running to the bathroom every 20-30 minutes on a good day, whether I had to go or not. I would always feel that urge. Because the urges were so overwhelming and constant, I began to isolate myself. I made a decision to never let someone else drive. I needed to be in complete control. While my friends went out drinking and having fun, I stayed at home where I knew I was safe in case of an “emergency.” I had no life. I had UC. Ulcerative colitis was my life and deep down I hated myself for that. I hated that my body couldn’t be “normal” like everyone else’s. I hated that I couldn’t talk about my illness. No one knew what it was and I didn’t want to have the misfortune of explaining it. I cried myself to sleep many nights. I didn’t understand how God could curse me with such a terrible thing.

woman in a hospital bed with an ostomyTime passed and treatments did too. My doctor tried everything. From the ACAs to corticosteroids and even biologics. Nothing worked. Visits became more frequent. Hospital stays were almost becoming a routine. I had to make a decision and I chose a better life. In 2014 I had my first of the ileal pouch–anal anastomosis or IPAA surgeries. My surgeon removed my large intestines and I would live the next six months with an ileostomy.

My ostomy changed my entire perspective on life.

When I first got my ostomy I put on a brave face. I knew I would never be able to get my large intestines back so I tried to think positive and look to the future. But it was hard. In the hospital I would open my gown just to look at myself. I couldn’t piece together in my mind how it had gotten to this. It seemed like just the other day I was getting diagnosed and now here I was, 22 years old with an ostomy!

In the hospital it was easy. I had help. The nurses were pretty good for the most part. Because I had just had the surgery, everything was still very sensitive. My body was sore and I had drains and a variety of things going inside different places in my body, but everyone had loving hands. When I got home, the hard part began. I didn’t know anything about taking care of an ostomy — only the little things I’d gone over with my nurse — but I’d never actually done it before!

When I was in the bathroom and family or friends came in to help, I would hide. I would hurry up and cover myself because I didn’t want them to see my weird body. Because I refused help from anyone other than my home healthcare or ostomy nurse, of course the first change on my own took about an hour (and after surgery, staying up and doing anything for an hour at a time is not an easy task).

woman standing up in a hospital gown and revealing her ostomy

Time passed and I learned the ins and outs. My quality of life was much better. I learned that an ostomy was not such a bad trade off for a life of less UC symptoms.  My body wasn’t weird, I was unique. I still had accidents. My bag came off probably over 100 times in that six month period. I shed tears. But my life was my own. I could go to the convenience store and not have to worry if it had a bathroom or not. I could ride in a car with people, go out with my friends. I could wake up in the morning without pain or a random fever. My ostomy gave me life. I learned to appreciate that life. Sure, I was different. I still am. But I have grown to love myself for that.

Now it was been over a year since the creation of my J-pouch and reversal of my ostomy. I am so grateful. Years ago I was so lost. I thought I would be sick my entire life — that no matter where I went in life, I would always be on someone’s toilet. But I’m not. I’m alive and living! Happier than I’ve ever been before. My experiences with my illness have taught me so much. I am so strong because of them. Looking back, I wouldn’t change one thing.

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Originally published: November 18, 2016
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