Here's an excerpt:
The nurse came in later in the morning to check on my wounds from surgery and check to see how my stoma looked. The surgery I had the previous day was to remove a tumor which included a bowel resection and build an ileostomy. The nurse wanted me to look at the stoma and to begin to get used to my new body. I now had a pouch on the outside of my body collecting waste. It was all too much to deal with. Two months previous I was running, doing yoga and weights to try to get rid of the five pounds I could not lose since the birth of my son. This put all of that in perspective. I told the nurse I did not want to see it. She cleansed the stoma and changed the pouch. She told me the stoma was swollen and would change in size dramatically over the next couple of months. I did not listen, I could not.
I was home for three days when the visiting nurse arrived. She had patience with me as I cried. I was not ready to deal with the ostomy. She let this go for a few visits. Around her third visit, or three weeks post surgery, came tough love. The nurse informed me insurance was not going to pay for any more visits and I was on my own after today. She oversaw me as I clumsily went through the steps and changed my ostomy pouch for the first time. I was now on to the next phase. I was capable for keeping the stoma cleansed and the skin healthy now I needed to deal with the body image problems. This was the hard part.
My husband will never admit it, but he was afraid of the ostomy. If I needed to change the appliance he would run out of the room. His behavior gave me a sense of something is wrong with me. It was summer time and I would not wear a bathing suit or shorts. I was very jealous of what I perceived as normal people swimming at the beach. I had problems I needed to deal with. I started to reach out on-line to the ostomy community. I read countless stories of people with cancer or crohn's disease dealing with ostomies. I discovered people with ostomies can swim, run marathons, and do anything. I became a student of the ostomy. It helped. I began to wear shorts and even exercise. I was transforming or rather becoming myself. However, my husband was not. I believe the ostomy is much like the do not ask do not tell. People cannot imagine having one and do not want to speak about it. That is fine for most friends, but when you want intimacy it is not OK. I broke down and confronted my husband. I made him admit he thought it was ugly. It was huge. I was mad, but how could I be mad if I thought the same thing a few short months ago. We began to communicate. He needed to be as comfortable with the ostomy as me. We began with him staying in the room while I changed the pouch. I explained what the wipe, powder and wafer was all about. It was working. My husband had a sense that this was not bad and in his artistic mind interesting. It was a great start to an awareness of my sense of self, along with his fear of my body and his greater fear of my death from cancer and how the ostomy fit in and saved my life. The ostomy was a good thing!
