Joanna Burgess gave a CRCWebinar “All Things Ostomy” this past week (February, 2017). I thought there was a lot of good information here and wanted to share the link for the webinar and highlight the Top Five Issues Patients Face at Home.
Presented through Fight Colorectal Cancer, Joanna is a WOCN, (Wound, Ostomy, Continence) nurse, and she has a unique perspective from living with her own ostomy. The Webinar includes practical tips for preparing for surgery, diet and nutrition, and more.
Of the Top Five Issues noted, my personal experience is much more positive. I’ve had some peristomal skin breakdown, and it can be annoying and difficult to control. But with patience and support from a WOCN, a solution can almost always be found to get it under control. Once you get that handled, the incidence of pouch leakage often greatly improves. I have had changes in my body shape that have caught me off-guard and led to unexpected leakage, but once I understood what was causing the leak I was able to get a handle on it in just a few pouch changes.
I have never had a problem with odor, and I think this is a fear based on pouches in the past. Newer pouches handle odor quite well.
You will be limited in your activities, especially right after surgery, so I recommend finding a good physical therapist to help you regain strength and mobility. Once you recover you should be good to go, and not limited in doing the things you enjoy.
Depression and anxiety are normal. I remember one particular day of sadness when I was in a busy shopping area and, while looking at all the people around me, realized that they all had colons, and I didn’t. I felt a profound sense of loss at that moment, and that lasted the whole day. And I confess to a constant, underlying sense of anxiety when I leave home. I ALWAYS have my emergency kit with me, and actually had to use it in an airport restroom. But it doesn’t stop me. Knowing that I’m prepared makes me more confident. And understanding the alternative to my ostomy, frankly, makes me happy to have it.