Peer Support
Learning how to live with an ostomy
Acute Care Surgery can lead to a need for subsequent elective procedures, including ostomy reversals, abdominal wall reconstruction after open abdomen management, and various wounds. I frequently see young, healthy males with ostomies. Thankfully, most patients are great candidates for reversal. But there are a variety of reasons why patients can't undergo reversal, at least not immediately. Injury to the anorectal sphincter complex would put the patient at a very high risk of incontinence. Another possibility is when the ostomy was created in the setting of acute bowel perforation, with an undiagnosed underlying inflammatory process. Reversing an ostomy without further workup could be problematic.
I have seen several young, healthy males who have to spend at least a handful of months with their ostomy while undergoing preoperative workup, and more than one who will likely have a prolonged or permanent ostomy. This can be daunting, especially when they were anticipating minimal delay before undergoing a reversal. Common concerns include how to wear normal clothes and how to manage the odor. While I can be supportive, I don't have any first-hand experience of living with an ostomy.
One particular patient expressed a desire to return to college, but he was convinced that he couldn’t go to class with an ostomy. Essentially he was resigned to putting his life on hold until his ostomy was reversed. His situation inspired me to seek out a peer who could show him it's possible to live with an ostomy. I reached out to my network of medical personnel that might know how to connect a patient with a peer support group. We have multiple support groups, including trauma survivors, epilepsy, and stroke, to name a few. Unfortunately, I quickly realized there is no group or service to link patients with someone who will answer their questions and hopefully decrease their fears and worries.
Many of the trauma patients who have an ostomy are young and healthy, leading active lives. Unlike elective ostomies, such as for inflammatory bowel disease, waking up after trauma with an ostomy is unanticipated and can be very distressing. Also, there is minimal or no chance for preoperative patient education. There is a certain taboo associated with talking about certain bodily functions, and I don't think many young males would ask their trauma surgeon if there is someone they can talk to about having an ostomy. But I think this could be an opportunity to improve the quality of life for a population that is likely overlooked.