Acceptance Is Key: Three Part Series - Part 3
Ellyn Mantell
You Have a Friend
“What did I do to myself?” Those were Ellyn Mantell’s first words—screams actually—when she returned home from the hospital following her 2014 ileostomy, took a nice long shower, and stepped out and saw herself in the mirror.
“Looking at my abdomen with this pouch hanging off of it made me want to curl up in a ball,” Ellyn wrote in her 2021 book, So Much More Than My Ostomy – Loving My Perfectly Imperfect Body.
Following 22 surgeries in 20 years, she met her 23rd, her ileostomy, head-on with an adrenaline rush fueled by her anticipation for a new and better life. But reality hit her that day when she looked in the mirror and saw her footlong pouch hanging down to below mid-thigh of her four-foot 11-inch frame.
It was only when her husband Bruce heard her screams that he came into the bathroom and lovingly told her how proud he was—how in awe really—of her courage. This was their new beginning, he said.
She wrote that soon after Bruce spoke to her, she slept with a peace she had not known for years.
Not too long ago, I was introduced to Ellyn by a mutual friend who was emphatic we should meet. My friend described Ellyn as a dynamo, a doer, and someone always on the front lines. She ticked off a list of Ellyn’s accomplishments since 2014 alone when she underwent her ileostomy.
Taking a breath following the listing, she said. “For those of us who know Ellyn, this list is no surprise.”
Some of the notably notable.
Just six months after that homecoming, she ran for and became president of the Union County Ostomy Support Group. She may have been the newest member of the almost 20-year-old group, but Ellyn wanted to help others. It’s a post she still holds today.
She used the Patient Bill of Rights to successfully lobby hospital administrators to start an outpatient ostomy clinic in New Jersey. The Overlook Hospital Ostomy Center opened its doors in June 2018. One of the few of its kind in New Jersey, the Center’s staff provides care and support for ostomy patients at the Medical Arts Building adjacent to Overlook Hospital in Summit.
She has also worked with ostomy nurses to form two other support groups under the Robert Woods Johnson aegis in New Jersey: Cooperman St. Barnabas Medical Center in Short Hills and Somerset Medical Center in Somerville.
Ellyn coordinated and commentated the Catwalk for a Cause at the 2019 UOAA convention. The fashion show featured ostomates from all over the country—some who even had two ostomies. All were clothed in gorgeous fabrics. Some even had their pouches hanging out of their clothing as a most glamourous accessory!
She is an official advocate for the national UOAA and speaks around the country.
But perhaps most important is her everyday work as a trained hospital visitor. A trained hospital visitor is the United Ostomy Associations of America’s (UOAA) term for a person who becomes certified upon passing a test following training and education in anatomy, psychosocial cues, and terminology. It’s in this role that she does advocacy work for patients. She describes herself in her book as being:
... a safe ear for those who are experiencing anger, shock, frustration, and fear. All these feelings are normal, all of them are necessary to acknowledge and discuss, and perhaps once those emotions are said aloud to another ostomate, they will have much less power over the patient.
In 2019, and again no surprise and so well-deserved, Ellyn became the first to receive the Mighty Advocate Award at the UOAA national conference.
We are lucky to have Ellyn on the front lines not only to help and support us but also to inspire us.
Ellyn may be a mighty advocate, but she is is always quick to remind us in simple, straightforward, everyday terms: Ostomy surgery is not a life-ending but a life-saving experience.
Remind yourself of that on a bleak day or a bright one.
Find the good.
Read Ellyn’s book or her blog.
Be inspired!
Learn more about Ellyn Mantell here:
Written by Barbara Mannino
Writer, Speaker, Brand Storyteller and Content Marketing Consultant
www.barbaramannino.com