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Patient tips What I want others to know about living with an ostomy

What I want others to know about living with an ostomy

In 2017, Rob S. was diagnosed with stage 1 bladder cancer at 49 years old. Along with his wife Loretta, Rob traveled to Cancer Treatment Centers of America® (CTCA), Chicago, to undergo treatment. After consulting with his care team, Rob underwent urostomy surgery, which redirects urine from the bladder through a stoma when some or all of the bladder has been surgically removed. Here, Rob shares the five things that help him live with an ostomy.

  1. If you’re scared, you’re not alone. This was a scary path for me to take, full of all kinds of uncertainties. My new journey with an ostomy began when I woke up from surgery and looked at my abdomen and saw a bag and tubes and hoses holding my urine. The reality of my bladder being gone began to sink in, and my first thought was, “How am I going to take care of this?” With the help of my wound care nurse, I began to feel less intimidated by my new normal.
  2. Practice the ostomy care basics (and keep notes nearby if you need them). For me, this included how to take off the ostomy wafer and clean the skin around the stoma, how to measure the size of my stoma so I could properly fit my ostomy wafer over the stoma and how to prevent leaks. As time passed, I gradually got more comfortable with taking care of my ostomy, and it became part of my life. Finding the proper ostomy supplies that work for you will also be important.

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  3. Lean into your care team. Whether you have a question or need help navigating something, my wound care team was there to help. Don’t hesitate to reach out if you need support.
  4. Go at your own pace. Although time has helped me understand my new body and ostomy, there are still things that I feel uncomfortable with, like swimming, removing my shirt in public and even playing some sports, because I feel like if someone sees my ostomy bag and stoma, they will get uncomfortable around me. I’m also fearful of injuring my ostomy with some activities or regular jobs I used to do beforehand.
  5. Try to keep the benefits in mind. I’m so thankful to God for giving me a second chance of life with my new bladder (that’s what I call my ostomy). Every time I go to the bathroom, shower, change my clothes or change my ostomy, it reminds me of the struggle and battle I had to go through fighting cancer.
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