ANONYMOUS’S PERSONAL STORY

At age 50 I had to say good-bye to a very diseased colon, but was encouraged when I learned about j-pouch surgery to create an ileoanal reservoir. This meant a life free of wearing and ileostomy bag — which did have to wear for a year and did not get along with at all — and I was excited. However, before I turned 51 I was found unable to continue working due to fecal incontinence, as it is pretty difficult to commute long distances by public transportation when you do not have ready access to a restroom, and your urgency can make or break your day. No employer wants to accommodate a day full of long trips to the restroom, reduced concentration, and uncontrollable interruptions!
Without a colon to neutralize the stool you pass, any leak can lead to excruciating burns on your skin, so the order of the day, every day, is to avoid leaks and clean them up immediately if they occur. I can not use adult diapers because they cause horrible irritation, and no one make a pad that is adequate, comfortable, and gives the right amount of coverage for the issues I deal with!
I have gradually had to give up all the activities I have enjoyed in my life: feature length films in theaters, backpacking trips, camping, kayaking, and even walks around the neighborhood have all become impossible due to incontinence. Even travel by car is frightening, because I live in an area plagued by impossible traffic issues. Travel to see my grandchildren is greatly impacted, as the 3-hour trip can become an excruciating exercise in pain and prayer that I make it to the next rest stop in time. I have even found it impossible to paint at my easel due to the fact that not only can I not concentrate when I am having urgency and frequency issues, but even a minute or two is enough time for paint to dry and become unworkable on the canvas.
So between less ability to travel, decreased activity leading to poor physical conditioning, reduced enjoyment from activities, and the frequent experiences of excruciating pain on the toilet from fissures and cramping due to Crohn’s … I am sleep deprived, depressed, and live an over-medicated life. And whenever I am questioned about my inability to join in on a fun activity … no one really wants to hear the gory and unpleasant details!
My greatest fear, however, is that I will someday become unable to take care of my own hygiene needs, and I will find myself slowly rotting away from the bottom up … in pain and smelly misery, and unable to do a thing about it.