What's It Like Being In College With An Ostomy?

By Amy Oestreicher on February 16, 2016

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 WalkMixed Media Gallery

Going to college with an ostomy wasn’t any easier. I didn’t know if these things were “okay” to talk about with professors, with friends, or at all. The more I held it in, the more I couldn’t take my situation anymore. These are medical circumstances, not my life … but why did they seem to feel like all my life was about?

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.

If you are reading this, you might not know what an ostomy is. That’s okay. I didn’t know what one was before I had one.

However, you may have a friend with an ostomy — you just might not know it yet. So, with that in mind, I’d like to share some things about ostomies that will hopefully make these kinds of things easier to talk about. We all have quirks — what’s the point of holding it in?

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 a former 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.”

Beechwood 05-31-15 Resilience for website - 103Speaking

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

Me and my wonderful husband

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.

IMG_0064

Performing Gutless & Grateful

There are a few things I didn’t know before my ostomy. But hopefully in reading this, you’ll know a little more about them too.

It’s hard enough feeling different in college. Let’s start talking about the little things that make us stand out.

How are you celebrating YOU today?

Follow this journey: Amy Oestreicher.  

Amy is currently touring Gutless & Grateful as a  mental health advocacy program to colleges nationwide, as well  for LGBT students and sexual assault survivors.  
For information on keynote presentations, private coaching, workshops and signature talkbacks, visit amyoes.com and follow her on TwitterInstagram, and Facebook.
Amy Oestreicher is a PTSD peer-peer specialist, artist, author, writer for The Huffington Post, award-winning health advocate, actress and playwright, eagerly sharing the lessons learned from trauma through her writing, mixed media art, performance and inspirational speaking. She's also a third year student at Hampshire College studying art, psychology, playwriting and theatre. Amy has written, directed and starred in a one woman musical about her life, Gutless & Grateful, has flourished as a mixed media and acrylic artist, with her art in multiple galleries and mounting dozens of solo art shows, and continues to share her story through her art, music, theatre, workshops and writings, as well as a sexual assault prevention program she tours to colleges across the country. Amy’s “beautiful detour” has inspire her passionate desire to create and help others. Her writings have appeared in Washington Post and On Being with Krista Tippet, her story has appeared on the TODAY Show and CBS, and her one-woman show has been seen in theatres across the country, earning rave reviews and accolades since it’s BroadwayWorld Award-nominated NYC debut. Determined to bridge the gap of communication between wellness resources on college campuses and students, Amy devised storytelling programs especially for colleges and universities to address the issue. Amy is currently touring the country with her one-woman musical, Gutless & Grateful, her keynote presentations, workshops and signature talkbacks, which she has devised specialized versions for corporations, college campuses, survivors, healthcare professionals, and artists. She is leading mixed media creativity workshops to promote creativity as a mindset, an essential survival skill. Amy also offers private coaching to help others navigate their own beautiful detours. Visit amyoes.com for more information.

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