It is very important to me to raise awareness of Ostomies because mine has given me back my life! After 23 abdominal surgeries over 23 years, having Lily, my stoma, has freed me from monthly visits to the emergency room, the ability to plan and travel, as well as sometimes annual surgeries. I haven’t felt as well in decades, and my appreciation to the medical community, including my Ostomy and Wound Care Nurses, is so very genuine.
The knowledge that I am strong and powerful is in total contrast to the feelings of impotence that followed me for so many years. This is the message I want others to have, and the feelings I want other to have!
I have written articles on my positive experiences as an ostomate for magazines: The Connection, which has a several thousand readership throughout northern central New Jersey and The Phoenix, which is the magazine for Ostomates.
As president of our Ostomy Support Group out of Overlook Medical Center, Summit, New Jersey, I have seen our numbers more than double in the three years since I have become an ostomate. We have had a number of prestigious medical personnel speak with and educate us, and we have taken the opportunity to educate them, as well. Our speakers have come from the following sub-specialties: emergency room, colo-rectal, gastro-enterology. general surgery, urology, thus far.
We need our own space at the Medical Center, and with the support of our Ostomy and Wound Care Nurses, we are advocating for an Ostomy Clinic as dedicated space. Presently, we are only able to get meeting time one hour every other month, and if there is snow, etc., we may not see each other for 4 months. As our group grows, by the time we embrace new members and introduce ourselves, there is very little time for our speakers, etc.
As a trained member of the Visitor Program from the UOAA, I speak with and visit many future and new ostomates. I have studied the various procedures and feel comfortable supporting them and their families. I have even taken a young woman to purchase a new wardrobe and have a fun lunch after finally leaving the hospital.
Whenever I am approached by a new or future ostomate, I follow up with an email, immediately place them on my mailing list, ask what we, as a group, and I as a caring person, can do for them to assist in their transition.
*I am submitting this photo because educating someone may come in the most unique of places! I was sharing an evening with life-long friends and their daughter and her husband and children. They were all in from California and we were preparing a meal together. Their son-in-law, Jason, who I barely knew, began to ask me questions about my ostomy and stoma. He was so interested, I took out my bag of supplies always housed in my handbag. I showed him how the bag attaches with the appliance, told him of Napoleon Bonaparte’s ostomy bag being rumored to be made of a goat’s bladder, and that is rumored to be why he holds his hand in his uniform. The more questions he asked, the more animated I became and the more information I was able to provide to not only Jason, but the other 4 adults. Fortunately, they are not in need of an ostomy, but in the future, they very well may know someone who is!