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Jean Gleba (the Advocacy Manager of the United Ostomy Association of America) presents Ellyn with the Mighty Advocate of the Year Award in 2019.

Jean Gleba (the Advocacy Manager of the United Ostomy Association of America) presents Ellyn with the Mighty Advocate of the Year Award in 2019.

My first barium enema was when I was about 10 or 11 years old. I remember the hospital gown I wore being so big, the bulb at the end of the tube used to enter the barium in my small rectum being huge, and the technician looking as frightened as I was. He had to be concerned with a patient as young as me. My doctor had told me this was the only way to help me with my chronic constipation, something I did understand, despite my young age. Today, barium enemas are a thing of the past, replaced by modern technology, but the memories of my chronic constipation still haunt me.

When I was unable to have a bowel movement for what was considered an “unhealthy” period of time, my mother would take my two sisters and me on a bus to Newark, New Jersey, where a pharmacist would mix a cocktail of castor oil, citrate of magnesia and other laxatives, and I would drink it, using all of my strength and determination to be a “good girl” and not vomit. Back on the bus, the tears would flow, since holding in days or weeks of stool was impossible. Humiliation and pain were mine to own for countless years.

There was never a good period of time with the inordinately slow motility I experienced, but the years passed and I learned to cope. Until the day, three months after a hysterectomy in my early 40’s, when my life changed forever. I had my first major small bowel obstruction.

The obstruction was caused by a spaghetti-shaped strand of adhesion as strong as iron, that strangled my ileum, the lower part of the small intestines. The pain was tantamount to a gunshot, I would imagine, and the waves of agony that resulted from peristalsis, were truly untenable. My ileum was gangrenous and had perforated by the time I was in surgery, and months of peritonitis, pancreatitis, and other affected organs resulted, as well as the loss of two feet of ileum. Three months later, the same thing happened, and I lost two more feet of mid jejunum.

Thus, the beginning of traveling a road with no map, direction, or ability for any in the medical profession to truly understand. And the worst part was that I had no identity, nothing to help the medical community to truly understand. They tried, believe me, they did. But each time I was rushed to the hospital with untenable pain, each of the 23 abdominal surgeries I experienced, each time a medical person asked me to explain my situation, I felt like I was in transition labor, and had to explain how I got pregnant.

Finally, when I had lost my colon with the exception of my rectum, the four feet of small intestines mentioned above, my gallbladder, had several hernia repairs and close to a dozen lysis of adhesions, my rectum shut down, had had enough, and a clear path was in front of me. I had my ileostomy, and best of all, I had an identity!

That was seven wonderful years ago, and rather than being in the ER or OR every three weeks, I now start and run Ostomy Support Groups in New Jersey. This fall, I should be starting my fourth. I am a national Advocate for the United Ostomy Associations of America and was named the MIGHTY ADVOCATE OF THE YEAR at the last conference, which was in 2019. Each month, I speak with at least 5-10 new ostomates or those with problems and I work to find them an answer.

There were close to two dozen years where all I could do was ride the waves of bowel obstructions, fighting to be seen and heard, to find an answer at the Mayo Clinic and some of the most reputable medical centers in the country. Now I KNOW the reality, my ostomy did that for me, and I can help others. They may not suffer from slow motility, in fact, very few have my background, but I understand in the deepest part of me, that all of us are the same…we have an incredible story to share, and we are not simply survivors, we are Thrivers!


 

An image of the blog author with short dark hair, wearing a red blouse.

Ellyn is a proud and appreciative Ostomate who uses her experience and knowledge to support, guide and empower others. In 2019, the United Ostomy Associations of America named Ellyn the Mighty Advocate. The honor was presented by Advocacy Manager, Jeanine Gleba, in recognition of Ellyn’s successful efforts to create an Outpatient Ostomy Center at her medical center, as well as starting and facilitating three Ostomy support groups. She is poised to start her fourth this fall!

Ellyn writes for THE PHOENIX Magazine, and has published her first book, SO MUCH MORE THAN MY OSTOMY: LOVING MY PERFECTLY IMPERFECT BODY! She has a blogsite entitled morethanmyostomy.com (more than my ostomy.com) which is updated every week.

Blessed with Bruce, her incredibly supportive husband, and her two daughters, Allison and Emily and their families, she is extremely close to her sisters, mom-in-law and wonderful friends.

 

When The Doctors Don’t Know About Your Condition This Love Takes Guts

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