My ears and eyes are always open for speakers and topics to enhance our monthly Ostomy Support Group meetings. Of course, there is so much to discuss, and an open forum is a great way to share thoughts, concerns, and questions, but hearing from those who are particularly knowledgeable about the myriad of issues we face is a win all around. We had a presentation by Jennifer Zator, MSW (jenniferzator1@gmail.com) recently, and it was thought-provoking. Jennifer is an ostomate, so she is well aware of the impact on life that an ostomy has and has an interesting story. She had an ostomy due to colonic dysmotility and Ehler’s Danlos Syndrome (EDS,) had it reversed, and then, had a permanent one. She is living proof that a permanent ostomy is a miracle for dysmotility. I agree, having suffered from dysmotility and EDS, as well.
After Jennifer spoke and shared her story, questions abounded about the emotional aspect of ostomy. Anxiety around leaking or calling attention to ourselves in a negative way was identified as the primary cause for emotional upset. Those of us who have “survived” such situations shared our experiences, and soon, I saw a smile on the faces of some who looked anxious at the beginning of the conversation.
As we continued to discuss anxiety, stories were shared about life “before and after” our lifesaving procedure. What became evident, although I hadn’t considered it at all, is that many in the medical community consider ostomy a failure. That was eye opening to me, although, in reality, I, too, experienced the same reaction when I brought up an ostomy to one of my gastroenterologists. His response was,” What if that fails to help you? Then look at what you have done to yourself!” I remember thinking at the time, am I a failure, or does the doctor feel a failure for having nothing more to offer me?
I am always pleased with our Ostomy Support Group meetings, but this meeting will always remain in my mind as incredible! We plan to pick up where we left off, since the recognition that if, in fact, the medical community doesn’t realize what a lifesaving and quality-enhancing procedure ostomy is, we have our work cut out for us. My goal is always to make ostomy a household word and to help others to marvel at the fact that ostomates live a beautiful life…healthier than many have been their entire lives. That is not a failure, but a huge WIN!
Good one
You were and are so positive about your ostomy!! All of us who love you appreciate your attitude because although we knew it was the right thing to do, we also knew it is life altering. Your spirit helped all of us get through. I know that sounds selfish because you were the one going through it.
Your ability to help and guide so many people is awesome! Just like you!
Love, Michele
I was totally unfamiliar w/this procedure and you are the one that educated me. Thank goodness I don’t have such problems but knowing you has opened my eyes to so much more than a serious procedure but how people have to have empathy for others and always encourage and be there when needed.