Learning to appreciate the resources, advice and support of others
By Deborah Conaway
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 a rectal prolapse. I was told it would never reoccur, yet, it prolapsed again. I was told a colostomy was the only remedy. I was stunned, to say the least. Colostomy. What does that mean? I was afraid. I was embarrassed. I was ashamed.
At first, I cried. Then I tried to understand and cope with the diagnosis. I didn’t have cancer. I didn’t have Crohn’s or ulcerative colitis. I had a non-functional sphincter muscle and nerve along with chronic irritable bowel syndrome that left me incontinent.
There I was, 51 years old and facing diapers or a colostomy bag! Wow! After much prayer and talks with my husband and surgeon, the surgery was scheduled. I had no clue what was about to happen to my body and to my life. Both would be forever changed.
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. Attached to me 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. She taught me how to care for the ‘thing that stuck out of my body.’ I hated it. I was disgusted by it. I was convinced everyone could smell it and was disgusted by it.
My husband, a nurse and 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 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. I couldn’t bring myself to let anyone see me. I felt different and I thought I’d be treated differently.
My New Body
Things I took for granted changed in a big way. No longer could I leave my home without my ‘supplies’ in case of an “accident.” I was very aware of my body and decided to wear extra large clothing to cover what I was sure everyone could see. Then 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, eventually she had to sign off. Then I really felt alone. I had so many accidents and things happened that I just didn’t know 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. I have to admit that I still make mistakes, but they don’t have the same effect on me. After all,
I didn’t change – my soul and spirit were the same. The colostomy didn’t change who I was, it just changed a part of my body. It became a part of me. In time, I learned to appreciate what it has added to my life.
Education and Support
One of the most important things that helped me was this magazine. I was sent home from the hospital with a folder full of information that would tell me of all the things that, at that time, were disgusting to me. I didn’t open that folder for over a month after my surgery. When I started to read everything that was in it, I couldn’t stop. I couldn’t believe all this information was written down, and much of it was exactly what I was feeling!
I read that issue of The Phoenix from cover to cover and then went to the UOAA website, www.ostomy.org. So much information was available to me! I called the local support group and talked to the president for at least 45 minutes. 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 support group meeting. My local support group has become invaluable to me! Members were willing to share their stories, which helped me to share mine.
Prior to Surgery
In hindsight, I wish I would have gone to the group prior to my surgery. The support group, my surgeon, and WOC Nurse, all suggested The Phoenix would be a source of tremendous help in trying to understand how my body had changed forever and how to deal with it. Each edition enlightens me and teaches me a technique that helps me to accept my ostomy and how to properly care for it. From diet, to exercise, to undergarments, to intimacy, to products to use, The Phoenix has been a friend to me.
I look forward to each issue and read it cover to cover as soon as I receive it. I learn so much from The Phoenix and credit it for my faster-than-expected journey back to normalcy.
Tracy Sloan of my support group adds the following: “From the first meeting I went to before my surgery, I have been so blessed to meet such open, honest and caring people. People with whom I can share my worries, concerns and 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.”
Deborah lives in Commerce City, CO with her husband Michael. She has a daughter Nicole and a grandson Tyler.