Low Rectal Cancer
Personal Experiences with Low Rectal Cancer
I was diagnosed with "ultra low" rectal cancer in 1997 at age 50. Like most recently diagnosed cancer patients, I knew nothing about low rectal cancer and only wanted to live to see my children grow up. The gastroenterologist who found the tumor after my family doctor recommended a colonoscopy at age 50, was quite cavalier about the tumor discovery and told me that I had low rectal cancer and that I would have to have a colostomy. I was in shock. Not only was I told that I had rectal cancer but that I would have wear a bag on my side for the rest of my life.
As with most newly diagnosed rectal cancer patients, I was then handed off to the surgeon. The surgeon, who is very competent, asked me to sign the usual release form. I wrote across the form in bold letter "Colostomy Not Authorized". He complied by giving me an end-to-end stapled anastomosis surgery, removing all of my rectum at the 2.5 cm level above the anal verge. I was back to work in a week. However, the predictable, but undisclosed, consequences of my surgery were immediately evident. The symptoms included clustering, fragmentation, incontinent and urgency. The surgeon was not sympathetic. He had "cured" the cancer and was not responsible for the consequences.
As an engineer who has an analytical approach to problem solving, I researched the Internet and discovered that "bowel management" was just starting to be discussed as a method of dealing with the consequences. As a child I was given enemas to deal with occasional constipation so I understood the concept. I began to experiment with the enema to see if I could avoid the consequences of the surgery that I had demanded because I refused to authorize a colostomy.
After some experimentation, I discovered that it was possible to do a daily enema while I was taking my daily shower or while sitting on the toilet. After a 10 to 15 minute period on the toilet to "empty out" I was able to "move on" with my life without having to suffer from the expected consequences of low rectal cancer -- the removal of all of my rectum.
I discussed my solution with all of the doctors who were part of my low rectal cancer experience They all agreed that my "solution" is unique but medically acceptable and they have given their approval.
It has now been over a decade since I was diagnosed and dealt with my ultra low rectal cancer. I live a "normal life" from the outside. Because an enema is a personal issue, other than my immediate family, no one knows that I have had "ultra low" rectal cancer and use a daily enema. My daily enema has become as routine as "brushing my teeth". I travel extensively and have "bushed my teeth" in hotels around the world with little inconvenience.
Over the past decade, I have monitored rectal cancer forums sites and medical research on the Internet. There seems to be a disconnect between the experiences of low rectal cancer survivors and medical research. Low rectal cancer survivors post their frustrations about the consequences of the treatment and seek empathy for their bowel function problems. Other survivors express the same experiences and offer diet and pharmaceutical options. Some survivors who have had a temporary J-Pouch colostomy have chosen to get a permanent colostomy because life was more predictable with a colostomy bag than having their bowel problems control their lives.
The daily enema may not be appropriate for all low cancer survivors. There has to be a certain amount of acceptance of the situation by the survivor and a willingness to deal with the consequences in a manner that would otherwise be considered unimaginable. However, it is your future and you do have an option to consider that is now recognized as a medically approved way of "living a full life" even after most of your rectum has been removed. Good luck.