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Published in The Mighty

When I first got my ostomy, I felt very alone. I felt self-conscious of the smell and sound, and sometimes I longed for my old body.

Fantasy Walk

Mixed Media Gallery

When I couldn’t take self-loathing anymore, I decided to make friends with it. I reached out. I inquired about support groups in my area and realized there are many people like me. I realized my ostomy is a beautiful thing and has enabled me to do all the things I’ve been able to accomplish over the years. It is my uniqueness.

These are 10 things I would have liked to tell myself when I first had an ostomy  — 10 things I didn’t know but eventually learned, which I am so grateful for today:

1. What it was.

I had no idea what an ostomy was before I had one. But I have a confession: I didn’t realize exactly what it was until a year later! Coming out of multiple surgeries, I 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 learned things in the past 10 years that have shocked, scared and relieved me, such as: You can’t actually feel your stoma — no nerve endings! I’ve had three ostomies and four ileostomies over the years. I didn’t realize how different they were. Once I learned about the differences and functions of each, I was better able to take care of them.

2. What my limits were.

When I saw that I’d have to live life with a bag stuck to 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! Swimming, karate, ballet, yoga — I’ve done everything I did before my ostomy and more.

3. There are so many strong ostomates.

I was privileged to be the Eastern regional recipient of the Great Comebacks award and meet five other amazing ostomates doing incredible things. There is a huge, supportive ostomy community. Check out this determined runnerall of these famous heroes who had inflammatory bowel disease, and did you know Great Comebacks was founded by aformer NFL linebacker?

4. Ostomates excel at innovation and inventiveness.

It turned out I was able to do all those things I thought I couldn’t — but that didn’t mean it was easy. Some of the best things in life take work, and that makes you appreciate it even more. Let’s just say that plastic wrap, Pepto-Bismol, waterproof tape and wetsuits have become good friends of mine. The beautiful music video for the song “Renegades” by X Ambassadors features an incredible man who just happens to also be blind. He says it best: “It’s not a matter of enjoying it more or less, it’s about enjoying it differently.”

I’ve also created a workshop for ostomy patients and healthcare professionals!

5. How amazing my body is.

I have a new respect for my body and the way it can function now.

6. Judgment hurts, but fear hurts more.

Stay informed and know the facts.  The more I actually understood how an ostomy worked, the more I realized how wonderful it was. After that, I took it as my responsibility to educate others. Instead of wondering if I was being “judged” by others, I took it as a privilege to inform them.

7. Everything is connected.

Take care of your full self: emotional, spiritual, mental and physical. If you’re stressed, you might be bloated or feel pain or discomfort. Remember to take deep breaths in difficult times.

Mommy Cant Fix This

8. The people who love you, love you.

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.

amy brandon cheese block

Art made in the hospital

9. Eat fresh.

You are what you eat, so eat whole and nourishing foods. Your ostomy will thank you, and so will you!

10. Life can go on.

Throughout these seven 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. And if this ostomy is all that I’m left with after everything, then I am truly grateful. More than that, I thank my ostomy for enabling me to live life to the fullest, to my fullest. I call it my Harry Potter thunderbolt scar: a symbol of strength, courage, individuality and life.

There are a few things I didn’t know before my ostomy. But what I look forward to most is everything left to learn. Thank you, ostomy, for making the world a wide open door once again.

Follow this journey Amy Oestreicher.

See Amy’s other articles for The Mighty here.

Find out more about living with an ostomy.

Learn more about my workshops for ostomates and patients here.

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