UOAA Discussion Board

Hi everyone!

Just joined your forum. I have a husband who is a Stage IV rectal cancer survivor (2005). He has had 16 surgeries since. Two years ago, he received a transverse colon loop colostomy. We were expecting an end colostomy. Last year, it was revised to an end colostomy because he had fecal matter not only going into his bag, but also out of his anus. (He has no rectum).

I have a lot of concerns about all of the challenges he has. However, I have a specific question. Is it detrimental to his health or stoma if he only changes his bag every 10-12 days? He is very uncomfortable with the whole ordeal and I guess he puts it off for as long as possible. Obviously if the bag or wafer was leaking, that would be a different story and he most assuredly would be changing immediately. His stoma area does not have rash or redness or anything like that.

Most try to get long wear from there appliances , so if he is doing great i'd not worry..

Ellsee:
I have to think that your husband’s deferred attention to otherwise routine care of his ostomy is based on a lingering emotional toll associated with his rectal cancer diagnosis and protracted treatments that have him feeling at odds with his body and sense of self.

While I suppose someone can purport to wanting to maximize the wear time of an ostomy wafer or pouch, 10 days between wafer/pouch changes on a regular basis does stretch the limits of what would be considered “usual and customary.”

By reading your introductory message, it is evident that your husband (and you, as his wife and caregiver) have been through challenging health circumstances that have left a wake of residual aftereffects that continue.

Not tending to his ostomy with more regularity is a way of avoiding emotional or physical reminders of all that your husband has been through.

I think all of here are sensitive to how an ostomy can have far reaching effects - on one’s sense of self, body image, relationships, intimacy, processing PTSD. Life can feel as thought it is fundamentally changed. Adapting and adjusting to life with an ostomy can encompass many layers of psychological healing and is more complicated then the outward presentations and tasks changing a wafer and pouch and emptying of a pouch.

Would your husband benefit from joining a support group (in person locally or online such as this forum) to get a sense of inclusion and commaraderie? I have had an ileostomy for 6 years and continue to engage in this forum for its many benefits to my mental and physical well-being in finding my best life with an ostomy within the constraints of frail health. Your husband may benefit from interacting with others who share similarities with him, in a warm and accepting environment where socially taboo topics of poop and embarrassing wafer leaks are met with a dose of humor and commonality.

Perhaps there is a counselor at your cancer treatment center that helps individuals and their families with life after cancer.

I think your husband’s lengthy ostomy wafer/pouch wear time is a call, of sorts, that he has aspects of his cancer experience/care that he needs help in processing.
Karen