"I Can't Believe This is Happening to Me!"

My Journey As An Ostomate, by Deborah Conaway, Member of United Ostomy Association of Metro Denver, March/April 2012 Ostomy Association of Metro Denver, Inc., Newsletter

The unbelievable had just happened. The words my doctors said, "You will have to undergo surgery to have a colostomy." No! this wasn't happening to me. Just seven months earlier, I had surgery for Rectal Prolapse, and was told it would 'NEVER' reoccur! And now, it had prolapsed again, and I was told 'Colostomy' was the only remedy. I was stunned, to say the least. Colostomy - What does this mean? I was afraid. I was embarrassed. I was ashamed. First I cried, and then I tried to understand and cope with the diagnosis. I didn't have Cancer, I didn't have Crohns or Colitis, no even IBD; I had a non-functional sphincter muscle and nerve, along with chronic IBS that left me fecally incontinent. Here I was - 51 yrs. old - facing diapers, or a bag! WOW! I thought, I wish I had cancer, it would be an easier decision. But it wasn't cancer. After much prayer, and talks with my husband and surgeon, it was decided - the surgery was scheduled. I had no clue what was about to happen, not only to my body, but to my life. It would forever be changed.

The Surgery
I was so numb, when I woke up to see my dear husband of 21 years, next to me, as well as a 'new opening' in my stomach that wasn't there before; attached was a bag, and of course many staples on my abdomen. It seemed like I was there forever, but I was home in five days. I had a visiting nurse (who became my lifeline) for a few weeks, as she began to teach me how to care for this 'thing that stuck out of my body'. I hated it, I just knew that everyone could smell it. I just knew that everyone would be as disgusted by it, I was disgusted by it. My husband, a nurse, my soul mate, surely saw me in a different light - at least I thought he did. He, of all people, understood that I was too ashamed to show it to him. In a very painful way - I was alone, very alone, and felt like I carried a dark secret. A secret that I didn't feel I could share. For the longest time, I hid myself from the world, from my church family, my dearest friends and my family. I couldn't bring myself to let anyone see me, I felt different; and I thought I'd be treated differently.

Learning My New Body
My life routines were all to change very quickly. Things I took for granted were changing - and changing in a big way. No longer could I leave my home without my 'supplies' for those 'just-in-case-of-an-accident' times. I was very aware of my body, and decided to wear extra large clothing to cover what I was sure everyone could see. There were the noises, I heard gas (over which I had no control) and was certain everyone around me could hear these noises too. I clung to my visiting nurse. She could do in five minutes what was taking me 45 minutes. Of course, after time, she had to sign off, and then I really felt alone. I had so many accidents and things happen that I just didn't know how to handle. I cried many tears during this time. However, I really had no choice but to go on, buck up, and learn to care for myself. After a few months, I could change my bag within ten minutes or so, and I have to admit I'm still learning. Still making mistakes, not as many, but they don't have the same effect on me. After all, I hadn't changed, my soul hadn't changed, my spirit hadn't changed - my body changed! It didn't define me, it hadn't changed me. It became a part of me. It 'is' a part of me. In time I will learn to appreciate what it has added to my life.

So much information was available to me! I called the local support group, and talked to Steve Johnson, (the President) who took at least 45 minutes of his precious time to talk and share with me. He, too, had a colostomy. Hearing him talk openly of something I was so ashamed of was very comforting. He encouraged me to attend a meeting, and meet others who have also been there and who are currently there. The support group was invaluable to me! There were others, others who had experienced my same thoughts and feelings. They were willing to share their stories, which, in turn, helped me to share mine, and continue to do so. In hindsight, I wish I would have gone to the group prior to my surgery.

A member of my support group adds the following quote:
"From the first meeting I went to before my surgery I have been so blessed to meet such open, honest and caring people who I can share my worries, concerns & triumphs of my ostomy. I can't imagine going through this journey without all of them. One can't possibly go to a meeting and feel like you don't fit in. Not only does it feel good to go and get advice, but I think it feels even better to go and give to someone just starting out on the journey."

******

For More information on Ostomy Support Groups please visit www.ostomy.org