Nicole’s Story

As a child I had chronic constipation and extreme abdominal pains.  In my twenties, I was diagnosed with Colonic Inertia and was told that I needed ostomy surgery. At that time, I declined surgery because I was scared of that option.  I continued to deal with the pain, bloating, harsh bowel regimens that would finally work at the worst times.  In my forties after three ER visits in 6 months and a 3rd doctor’s opinion, I realized it wasn’t if I was going to have surgery, it was when.

What was your biggest fear?

That I would never again be able to give 100% to my children and my husband and that I could never feel comfortable to give big hugs to friends and loved ones again.

Was there something you were worried you would not be able to do after your ostomy surgery?

Swimming and long walks.

Did those fears become a reality or were you surprised you could actually do what you were worried you couldn’t?

The ostomy surgery gave me my life back.  Prior to the surgery, I didn’t realize how I had withdrawn from activities in order to hide my problem.  I am extremely grateful that I get to enjoy life now without pain and my ostomy surgery has never held me back.  Nine months after my surgery, my family and I went to Disney World and I remember sitting and laughing to myself because I was waiting for others to use the restrooms.  I sat on the bench and smiled, it was a feeling that I was not going to forget.  I can swim and walk and enjoy these activities to their fullest.  Hugs were never taken away from me.  I enjoy them every day from my family and friends.  When I meet a person with a new ostomy, I was always offer a hug.  I think we all appreciate being loved unconditionally.

How has your ostomy changed you?

My ostomy has given me freedom and the power to enjoy both the present and the future.  I love to educate health care workers on understanding ostomy surgeries, but more importantly on how to provide dignity and respect when caring for others.

What helped you most during your recovery?

My husband’s love and support as he was by my side each step of the way.  My surgeon Dr. Richard Greenberg’s walking beside me in the hospital hallway 12 days after my surgery to help me through an ileus and other complications.  Rolf Benirschkes’ phone call to my husband while I was going through blood transfusions and remembering Rolf’s words of inspiration.  Terre, my friend who inspires me to be my best and who is there for me through both good and difficult times.

Did something help prepare you for your operation?  If so, what was it?

The best thing that prepared me for my surgery was Rolf’s book, Alive & Kicking, that was given to me by my friend and WOCN, Lauri.  The book detailed Rolf’s journey and others who had extreme strength to not only survive,  but go on to achieve great accomplishments in their lives after ostomy surgery.  I called the publisher of Rolf’s book and left a message to thank them for touching my life in a positive way and preparing me for surgery scheduled for the next day.  Two hours later I received the most incredible phone call from no other than Rolf himself.  A true football hero was taking the time to listen to me and be “real” about the upcoming journey I was about to take.  I will always remember the strong but kind voice on the phone.

What do you wish someone had told you before your ostomy operation?

To allow others to help you deal with your immediate recovery.

Was there a specific WOCNurse or a doctor who helped you that you’d like to thank?  

Dr. Richard Greenberg, my excellent surgeon who helped answer all my questions pre and post-surgery and took the time to be kind.  His team of residents who provided the day to day care during my surgery and recovery at Einstein Hospital in Philadelphia, PA.  They included Dr. Jason, Dr. Justin, and Dr. Yang. Lauri Weiss, my friend and WOCN who also connected me with Michelle Quiggle who mapped my ostomy site prior to surgery.


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