10 Things I Wish I Could Tell Myself Before My Ostomy
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.
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 runner, all 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.”
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.
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.
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.
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Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, writer for The Huffington Post, speaker for TEDx and RAINN, health advocate, award-winning actress, and playwright. As a survivor and “thriver” of nearly 30 surgeries, a coma, sexual abuse, organ failure, and a decade of medical trauma, Amy has been challenged with moments of extreme difficulty. But, as an artist, actress, college student, and overall lover of life, Amy eagerly shares the lessons learned from trauma and has brought out the stories that unite us all through her writing, mixed media art, performance and inspirational speaking. Amy has headlined international conferences on women’s leadership, entrepreneurship, mental health, disability, creativity, art therapy, and domestic violence prevention. She is a regular lifestyle, wellness, and arts contributor for over 70 notable online and print publications, and and her story has appeared on NBC’s TODAY, CBS, Cosmopolitan, Seventeen Magazine, Washington Post, Good Housekeeping, MSNBC, among others. She has devised workshops for the Transformative Language Arts Network National Conference, the Eating Recovery Foundation, the 40th Anniversary New England Educational Opportunity Association Milestones Conference, the Annual National Mental Health America Conference, and others, and was this year’s keynote speaker for the Hawaii Pacific Rim International Conference on Diversity and Disability. To celebrate her own “beautiful detour”, Amy created the #LoveMyDetour campaign, to help others cope in the face of unexpected events. To creatively engage others in improving mental health , Amy developed a program combining mental health advocacy, sexual assault awareness, PTSD education and Broadway Theatre for college campuses, organizations and conferences, launching a Detourist Network, and Detourist Workshops to creatively fight stigma in society. “Detourism” is also the subject of her TEDx Talk and upcoming book, My Beautiful Detour, available December 2017. As the 2014 Eastern Regional Recipient of Convatec’s Great Comebacks Award and WEGO Health 2016 “Health Activist Hero,” Amy is a passionate voice in the ostomy community, founding the online community Fearless Ostomates, speaking for National and Regional WOCN conferences, and writing for the official print publication of the UOAA. Her presentations on alternative medicine, and patient advocacy and healthcare have also been accepted to international conferences on patient care, internal medicine, medical trauma and therapeutic humor in healthcare. As a playwright, Amy has received awards and accolades for engaging her audiences in dynamic conversation on trauma’s effects on society, including Women Around Town’s “Women to Celebrate 2014, BroadwayWorld Best Theatre Debut, and Bistro Awards New York Top Pick. Amy has written, directed and starred in a one-woman musical about her life, Gutless & Grateful, touring theatres, schools, festivals, conventions and organizations since it’s 2012 New York debut. Her original, full-length drama, Imprints, exploring the effects of trauma on the family and the healing power of creativity, was a finalist at Manhattan Repertory Theatre, and is currently in development for a full New York production. Amy’s collaboration with Beechwood Arts on “Resilience and the Power of the Human Spirit”, has traveled around the world, using her monologues, art, writing and recipes to express the life-altering detours and ultimately the invaluable gifts of her resilient journey. She is also a passionate arts advocate, a successful mixed media visual artist, a continuing education studio arts teacher, and an active member of the League of Professional Theatre Women, League for Advancement of New England Storytellers, Fairfield County Cultural Alliance, Theatre Artist Workshop, and several art guilds throughout Connecticut and New York. 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 creative coaching and consulting services help others navigate their own “life detours,” and prides herself most on ending each night with a gratitude list. Together, we’re stronger.
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