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10 Things I Didn't Know Before I Had My Ostomy

Posted By Jenna A. Bertini, Tuesday, December 20, 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. When I couldn’t take self-loathing anymore, I decided to make friends with my ostomy. 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 activities for 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, including celebrities! 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 the things I thought I couldn’t — but that didn’t mean it was easy. Some of the best things in life take hard work, and that makes you appreciate them even more. Let’s just say that plastic wrap, Pepto-Bismol, waterproof tape and wet suits have become good friends of mine. I’ve even made a creative workshop for ostomy patients and healthcare professionals. The “Renegades” music video by X Ambassadors features a blind man who 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 selfemotional, spiritual, mental and physical.

If you’re stressed you might get physical side effects, such as being bloated or feeling pain and 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 to the ones you love 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 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 my journey.


About the author:

Amy OestreicherAmy Oestreicher is a PTSD peer-to-peer specialist, artist, author, writer for Huffington Post, speaker for TEDx and RAINN, health advocate, survivor, award-winning actress and playwright who is sharing the lessons learned from trauma through her writing, mixed media art, performance and inspirational speaking.

As the creator of the Gutless & Grateful, a one-woman autobiographical musical, Amy has toured theaters nationwide, along with a program combining mental health advocacy, sexual assault awareness and Broadway Theatre for college campuses and international conferences. Her original, full-length drama, Imprints, premiered at the NYC Producer's Club in May 2016, exploring how trauma affects family as well as the individual.

To celebrate her own “beautiful detour,” Amy created the #LoveMyDetour social media campaign, to help others cope in the face of unexpected events. "Detourism" is the subject of her TEDx talk and upcoming book, My Beautiful Detour, available December 2017. As Eastern Regional Recipient of Convatec’s Great Comebacks Award, Amy has contributed to over 70 notable online and print publications, and her story has appeared on NBC's TODAY, CBS and Cosmopolitan, among others. She has devised workshops for conferences nationwide and presented at the 2016 Northeast Region WOCN Conference, and is the 2016 keynote speaker for the Hawaii Pacific Rim International Conference on Diversity and Disability. To learn about the art of navigating beautiful detours and to sign up for updates visit amyoes.com.

Tags:  advice  advocate  disability  educate  Great Comebacks  ileostomy  inform  learn  life lessons  ostomate  ostomy  resilient  stoma  strong  support  surgery  tips 

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Dealing With Life As A Double Ostomate

Posted By Jenna A. Bertini, Friday, December 9, 2016
Updated: Friday, December 9, 2016

taylor baby picture

How my journey as a double ostomate began:

I grew up in a loving family with five siblings. At the age of three, along with being a twin, I was developing my personality while enjoying time with my siblings, getting ready to start pre-school and feeling filled with joy. I had no worries in the world. I never imagined that one day playing in the backyard my clothing would start to fill with blood.

My parents rushed me to the University Of Maryland Medical Center (UMMC) in Baltimore. After several days of testing, the diagnosis was a rare form of vaginal cancer called Rhabdomyosarcoma. After receiving advice from medical physicians, my parents decided to transfer me to a hospital that specialized in this rare type of cancer.

taylor surgery in hospital

My childhood, and most of my adolescent years, was spent at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York. Along with chemotherapy, radiation and too many surgeries to count, I was faced with having two ostomies (a colostomy & urostomy) for rest of my life. The doctors, surgeons, social workers, medical staff and ostomy nurses made my life as normal as possible. The care they showed was beyond their medical titles and duties. My family is ever so grateful to everyone at MSKCC for their care.

After the age of 12, I was able to do my follow up visit back in Baltimore under the care of Dr. Fromm at UMMC. Since 1995, I have been under the care of Dr. Faud Abbas at the Sinai Hospital of Baltimore. I look forward to my doctor visits. When you find a doctor like Dr. Abbas, you feel comfortable knowing your health is in good hands.

Since having two ostomies from the age of three, my life has proven to be a journey of unexpected challenges. While others appeared to be living a “normal life,” I struggled with self-pity, unhappiness, depression and low self-esteem. I found it hard, embarrassing and painful to be considered “different.”

How I dealt with what life had dealt me:

taylor ostomy awaress I Can shirtMy parents taught me to love myself and to know that my medical circumstance does not dictate my future. Their faith in God helped me to know I was going to be alright.

The support from my family and friends made my life feel normal again. I contacted my local United Ostomy Associations of America, Inc. (UOAA) chapter for support. I discussed different ostomy products to try with ostomy nurses. If a product worked for me, I stuck with that. I dealt with leaks and blowouts by keeping extra clothes and products in my car, at work and at friends’ houses. I still do not dwell on leaks; I clean up and keep moving. When you accept being an ostomate, others will. It is what it is and no one is to blame. If you lived your life before you had an ostomy there is no reason why you cannot live your life with one. Love the essence of who you are.

taylor woke up like thisWhat helped me to accept my ostomies:

The mantra LIVE FOR TODAY - don’t dwell on what happened yesterday and enjoy the moment is what helped me to learn that I am more than my ostomies.

Advice for my fellow ostomates:

taylor fashion gold dressI encourage other ostomates to get out and try activities and hobbies such as sports, reading, having fun, laughing, attending support groups, leaning on family for support and seeking out to the WOCN Society for additional support. And do not let your ostomy pouches stop your fashion style! Try different styles of clothing to see what makes you feel confident - the best fashion style we have is our inner beauty.

I am blessed to have my desires, passions and dreams come true. I am a double ostomate and have been a fashion model for over 17 years. Through my career, I am helping cancer survivors, encouraging ostomy patients, guiding aspiring fashion models and inspiring those suffering with low self-esteem. Just by looking at my outer appearance, no one could ever tell I live with these medical adversities and what I deal with 24 hours/7 days a week.

taylor fashion black dress

We all have the ability to make a difference, to change lives, to be a role model and be all that we can be as an ostomate.

I know am beautiful from the inside out, despite my life being a journey of unexpected challenges. I am trying to change the lives of others by telling my story through my book, Pretty Girl Blues: An Autobiography, my intimate journey of being a survivor. The adversities and obstacles that I overcame allow me to encourage, inspire and motivate others to “live their life on purpose with a purpose for a purpose.”

 

About the Author:
Jearlean Alston-Taylor was born and raised in Southwest Baltimore, MD. She grew up in a happy home with five siblings, including her twin sister. At the age of three, Taylor was diagnosed with a rare form of cancer. Doctors thought she would not live to see four. Today, Taylor has beaten all odds and uses writing and modeling as an outlet and a way to connect with other ostomates. Taylor is the CEO of J & Company Christian Modeling and Osto Beauties.

Tags:  cancer  chemotherapy  colostomy  double  fashion  inspire  journey  model  motivate  nurses  ostomate  ostomy  p  radiation  Rhabdomyosarcoma  specialized care  struggle  support  surgery  survivor  urostomy 

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