Hello! I’m Ellyn. I’m the mom of two amazing women, grandmother to four precious children, and wife (for almost 50 years!) to my husband Bruce. I’m also an ostomate, advocate, motivational speaker…and so much more!
Like so many of the ostomates I know, my story is full of bumps in the road. It started in my early 40’s when I had a hysterectomy due to large fibroid tumors. At the time, I was thrilled to be free of pain and bleeding as well as the relief to have my chronic constipation alleviated. Three months after the hysterectomy, I had my first major small bowel obstruction and had 2′ of ileum, the lower small intestine, removed.
We didn’t know that at that time but my intestine perforated. I had peritonitis, pancreatitis, and inflammation which eventually caused the removal of my gallbladder. After a lengthy hospitalization, I returned home to have another small bowel obstruction that caused the removal of the mid-jejunum. At that point, obstructions were frequent and adhesions or scar tissue wreaked havoc. Eventually, I had my colon removed at the Mayo Clinic in Rochester, Minnesota. The problem was that my rectum was left. Eventually, that too failed. My 23rd (and hopefully last) surgery was my ileostomy in March 2014.
Since this experience, I have been dedicated to supporting and advocating for other women facing the same challenges I am. I am president of the Union County Ostomy Support Group of New Jersey. (We meet on the second Tuesday of every month – contact me if you’d like to join us!) Our group has more than tripled in the past 4 years since I became president. We are engaging with doctors to educate them, even as they educate us. I’m also trained as a certified visitor which means I spend time meeting with future ostomates as well as those in the hospital or rehabilitation center.
As a volunteer for the American Cancer Society and the United Ostomy Association of America, I speak with dozens of future and current ostomates to support and guide them as they deal with outpatient needs. It is out of this situation that I realized there is not enough outpatient support for patients. I wrote two dozen letters to doctors in the area telling them of the need for more support. As a result of meetings with these doctors, I am now in the process of starting new ostomy support groups at medical centers and hospitals who have never had them. In addition, I work with the advocacy program of the United Ostomy Association of America to raise awareness of ostomies.
You can also find me writing my regular column for THE CONNECTION, a magazine for residents for the area where I live in New Jersey. Additionally, I write the beauty corner column for THE PHOENIX MAGAZINE which is for Ostomates. I initiated the beauty section because I saw a true connection between self-image, self-esteem and perceived body disfigurement. In everything I do, I want to create positive feelings to assist my fellow ostomates in living a beautiful life!
When I’m not writing, speaking or volunteering, you can find me spending my time with my family, eating jelly beans or shopping. I am constantly curating my wardrobe because I love and adore fashion and have an incredible need to constantly create…even if it is only in my mind!
