My name is Sue. My ostomy journey began in January of 2017 when I was 58 and diagnosed with rectal cancel following a routine colostomy. I underwent radiation followed up with oral chemotherapy. In late June of that year, I had an APR (Abdominal Peritoneal Resection) and received a colostomy at that time. Following surgery, and while continuing oral chemotherapy I underwent 8 weeks of chemotherapy infusions. I continued oral chemotherapy throughout the remainder of the year all the time being treated by my oncologist. I continued blood testing for five years following my diagnosis. I received word from my oncologist in 2021, stating I was clear of cancer. I will live with my colostomy for the duration of my existence. I initially begged not to have a colostomy and was informed differently. As in life, you either adapt or don’t. I chose the latter. I have now lived with my colostomy for 8 years.
Initially, the transition to placing output in a bag on your waist was exceptionally unappealing to me. I would have rather continued to use the stool the way I have grown accustomed to. After much trial and error, I have found the transition tolerable, adaptable and doable. One fortunate feature of a colostomy is that I can for the most part disguise it and no one would know I had one unless I relayed it to them.
The word colostomy was now a part of my vocabulary and soon became the focus of my life. I wanted to know so much as to how to get back to “normal”. I wanted to climb, hike and ski in the mountains, sail and swim the seas and oceans, and love every day given to me as fully as possible. Should you be in my shoes I would tell you to get past those scary moments, move forward towards the uncertainty and metamorphosis into your new self. What were your choices?
Following surgery is a tough transitional time. There are many accidents you never believed could happen, the smelling of yourself in a different way, and tough clean ups. I continued to know that as I had been told by the ostomy nurse, your body will transition, and your ostomy will change. Know that this is true; and as with anything, it gets easier. Prior to and following surgery, I attended Ostomy Meetings that shed light on how others are transitioning. It was eye opening and beneficial to meet and acquire other ostomates “tips and tricks” in dealing with and transitioning through life with an ostomy.
Knowing what I do now, I wished I had been informed that life beyond an ostomy is limitless. I learned early from a fellow ostomate attending our meetings, she was pregnant. How does that work? Multiple other meetings later, I met a woman from SE IA with 6 children who had the ostomy throughout all. I met ostomates doing things I did not believe were possible and without their testament, I would not have believed. If you can only imagine….
The management of an ostomy is different as you are now maintaining your rear business right in front of you. You can monitor the blemishes, manage any abnormalities with assistance of your ostomy nurse and begin a life towards routine maintenance care of your ostomy. You would have done the same for your bum, but it would have been harder to see.
My spouse was significant in my healing and transition into the new life as an ostomate. My family also pulled together in support, i.e. hospital and home visits. The ostomy support group was beneficial to know others were dealing with similar ups and downs in their transition and sometimes feeling alienated. Don’t worry, there are others who say it was the best thing in their life. Isn’t that something.
I shed many tears, had many accidents I would rather not count nor relive, and worry when my next colonoscopy is. I experience a bit of PTSD around the time of my surgery for unknown reasons as I am alive. I am surprised at how I have adjusted to my ostomy. I named my ostomy Penelope when it was good and Prudence when it was a bit on the fussy side. I also called it Brunhilda.
Following my surgery and working with an ostomy for eight years now, I have put away any embarrassment or feelings of shame and work towards making every day all that it can be. Yes I have an ostomy, but no does it slow me down.
One moment that lingers in my memory is the day I woke after a 2nd colostomy to pinpoint the location of the tumor, I woke from surgery to an angels voice saying, “my name is Jenny Cataldo and I am a cancer advocate and you can live a long full life with an ostomy doing the things you wish to do, swim in the ocean, climb Mt. Kilimanjaro and live out your dreams, all while have an ostomy.” She assured me that life with an ostomy could be a livable and doable thing. My world would not come to an end.
As I head to an Ostomy Meeting, I leave you with this – Keep your head up, your spirits high and your outlook optimistic. Everything will get better, better, better, and each day strive for the best – with an ostomy.