What I Wish I Knew About Ostomy Surgery for My Crohn’s Disease

Fact checked by Nick Blackmer

For more than half of my life I’ve lived with a chronic illness that has altered the course of my life. I was diagnosed with Crohn’s disease when I was 14 years old. At a time when your body is changing and life is new and exciting, my body started to turn on me and change my life forever.

I quickly learned I had no control of the changes that were happening to my body, but what I have learned is that I do have control of how I respond to these changes. I have learned and continue to learn that I must remain true to myself to get through my often very difficult life with Crohn’s disease.

Editor’s Note: Crohn’s disease is a form of inflammatory bowel disease, or IBD. It’s a chronic disease that causes inflammation in your digestive tract.

The summer before I began high school I started experiencing symptoms such as abdominal pain, diarrhea, and severe weight loss. I knew in the back of my mind that something was terribly wrong. After a series of diagnostic testing, I was diagnosed with a severe case of Crohn’s disease.

Since diagnosis, I have had several hospitalizations, procedures, and surgeries. For over a decade, I suffered immensely because of the debilitating effects of Crohn’s disease. I struggled mentally and physically for over a decade, trying to evade ostomy surgery due to the negative stigma associated with colostomy bags.

Editor’s Note: An ostomy surgery of the bowel changes the way matter leaves your intestines. As part of the surgery, a healthcare provider will create a stoma (opening) in your abdomen and then stick a bag around the stoma so that the intestinal matter can be disposed of through the stoma and into the bag that is outside of your body. 

I was striving to be “normal” and avoid the stigmas associated with having an ostomy by clinging to the very thing that was slowly killing me. But there came a time that I had no choice and ostomy surgery was inevitable—it was a matter of life and death.

Due to the severity of my disease, my entire colon was removed in a procedure called a proctocolectomy. My total proctocolectomy (removal of the colon and rectum) left me with a permanent ileostomy.

Editor’s Note: An ileostomy is a type of ostomy surgery that brings the ileum (the lowest part of the small intestine) through the stoma. A bag is then stuck to the outside of your body, around your stoma, to collect your intestine’s contents. 

I had tried to hold on as long as I could to my colon. But it turns out that having my colon removed was the best thing that has happened to me. And now there is absolutely no way I would want to go back other than to do the surgery sooner. My quality of life improved, hope resurfaced, and something that I least expected to emerge from this surgery grew stronger: self-love.

What I wish I had known before my Crohn’s diagnosis is that having ostomy surgery would be the best thing that happened to me and that I would learn to love, accept, and embrace my ostomy.

Throughout my journey with chronic illness, I’ve gone through many physical changes due to the medicines I’ve been on, the surgeries I’ve had, and the effects of living with the disease. Because of those physical changes, I’ve gone through many emotional and mental changes as well.

Through it all, I have learned to remain constant in my beliefs, and one of those beliefs is to not let the thoughts of others control how I view myself. I’ve learned the importance of loving myself, staying true to myself, and knowing I am capable of overcoming anything. I’ve learned that one of life’s most rewarding challenges is to accept yourself for who you are and all that you are, completely and consistently.

I’ve learned to remain hopeful. I’ve learned to be happy in spite of the difficulties. I’ve learned that I have to keep fighting. I’ve learned that you must seek to find the beauty in all things.

I am so in love with my ostomy; my ostomy saved my life. I’ve learned that my experiences will allow me to overcome everything I am going through and will go through because these experiences have made me who I am. They have molded me to become the woman I am today. Each and every day, when I look at myself in the mirror, I look at my ostomy, and I am reminded just how special life is and how strong I really am.

What I wish I had known prior to my diagnosis is that I would be OK. Through it all—every doctor’s appointment, every hospitalization, every surgery, and even living with an ostomy— everything would be OK. My greatest fear has turned into my greatest passion, and that is what I wish I had known.

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