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10 things I wish I could go back and tell myself before getting an ostomy

Live every day on a fresh new start.

When I first got my ostomy, I felt very alone. I felt self-conscious of the smell and sounds it made and sometimes longed for my old body. When I couldn’t take anymore self-loathing, I decided to make friends with it instead. I began reaching out for help, inquired about support groups in my area, and discovered there are so many ostomates just like me.

If I could go back in time to my pre-ostomy days, here are a few things I would tell myself. Ten things I didn’t know but eventually learned, which I am grateful for today.

1. What it was.

I had no idea what an ostomy was before I had one. And I have a confession — I didn’t even know exactly what it was until a year later! Ten years ago I was recovering from multiple surgeries and had so many bags and new anatomical surprises to think about that a little pink bulge on my belly seemed to be the least of my problems. I've had several different types of ostomies over the years and didn’t realize how different they all were. Once I learned about the functions of each, I was better able to take care of them.

2. What my limits were.

When I knew that I’d have to live with a bag on my side, I assumed I’d be “fragile” for the rest of my life. But believe it or not, there are so many active ostomates out there. It turned out that I was able to do all the things I thought I couldn’t, but that didn’t mean it was easy. Swimming, karate, ballet, yoga — I’ve done everything I did before my ostomy, and more! 

3. There are many inspiring ostomates.

I was privileged to be the Eastern regional recipient of the Great Comebacks® award in 2015 and met five other ostomates doing incredible things. There is a huge, supportive ostomy community that will embrace you. And did you know Great Comebacks® was founded by former NFL linebacker Rolf Benirschke?

4. We excel at innovation and inventiveness.

Support wraps, stoma guards, and pouch covers have helped me become more confident. Many products and accessories are invented by people with an ostomy. I've even created workshops for ostomy patients and healthcare professionals. Innovation is often the failure that comes before success. Some of the best things in life take hard work, but that makes you appreciate them even more. 

5. How amazing my body actually is.

I have a new respect for my body and the way it can function now. More than that, I am thankful for an ostomy enabling me to live my life to the fullest. I call it my Harry Potter thunderbolt scar: a symbol of strength, courage, individuality, and life. 

6. That judgment hurts, but fear hurts more.

The more I actually understood that an ostomy is a lifesaving surgery, the more I realized how wonderful it was. I now looked at it as my responsibility to stay informed, know the facts, and educate others. Instead of wondering if I was being judged by others, I viewed it as a privilege to inform them.

7. How everything is connected.

I started taking care of my full self: emotional, spiritual, mental and physical. If I'm stressed, I might become bloated or feel tension and discomfort. I remember to take deep breaths during difficult times and pay attention to my feelings.

8. The people who love me, truly love me.

If you’re just getting comfortable with your ostomy, remember that your support system loves you for who you are. You are more than your ostomy. Reach out when you feel alone and never forget how loved you are.

9. To eat healthier.

As the saying goes, "you are what you eat." Now I eat whole and nourishing foods. Trust me, your body will thank you and so will your ostomy!

10. That life will go on.

Throughout the years I’ve been strong, determined, and willing to do whatever it took to stay alive. I’ve dealt with tubes, bags, poles, you name it. So if this is what I’m left with after everything I've survived, then I am truly grateful. I realized my ostomy is a beautiful thing that has enabled me to do all the things I’ve been able to accomplish over the years. It is my uniqueness.

My ostomy has made the world a wide-open door once again. Live every day on a fresh new start. What I look forward to most is everything left to learn.

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