Living with an Ostomy

Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work

MAY 05, 2017

Cancer treatment inevitably brings body changes. Some, like hair loss due to chemotherapy, are temporary (although it surely does not feel that way at the time), and some are permanent. Surgical changes usually fall in that category. A missing breast does not regenerate, and a reconstructed breast is never quite the same. Sometimes breast reconstructions fail. Any organ that is removed is gone for good, and sometimes it is more obvious than others.

One of the hardest changes can be learning to live with an ostomy, otherwise known as the bag. Increasingly, surgeons are able to someday do a second surgery to re-establish normal bowel function, but this is not always possible. Even if it is, there is an indefinite period of time when you have to manage and live with an ostomy pouch.

If this is your situation, I strongly suggest that you consider finding a support group or an online group or at least a cancer buddy in the same situation. Anything is easier with company. The second piece of advice is to remember that there are multiple kinds of appliances available, and, if you have a lot of trouble with what you have, talk to your doctor about an alternative.

This is from Susan Gubar:

Dealing With an Ostomy


Six days after an unremarkable lumpectomy, I had rushed to the local hospital, not so much because of pain but out of concern. I had been eating and drinking as usual, but what was going in was not coming out.
I cursed my faulty plumbing — an operation for ovarian cancer had produced infections and then, in 2009, an
ileostomy. I’m one of about half a million Americans whose body wastes are collected in disposable external pouches. And now the pouch was clean and empty, which was a problem.
Unfortunately, I had made the situation worse by forgetting to bring a book to the hospital with me. Within an hour, a nurse named Rachel came to my rescue with a thriller, “The Donor.” According to the flap, Frank M. Robinson’s hero awakens in a recovery room to discover that one of his kidneys has been harvested by a mysterious villain who will next time seize the poor guy’s heart. Sounded perfect.
Rachel’s book, a life preserver, saw me through 12 hours in the emergency room as well as most of the next day, which I spent in a hospital room. I was receiving “rest care”: nothing by mouth, an IV with saline to prevent dehydration. If my intestines did not start working, I would be transferred by ambulance to a major hospital in Indianapolis, an hour and a half away from Bloomington, where I live.
One doctor told me: “You have an 80 percent chance that the obstruction will right itself.”

Above content provided by Beth Israel Deaconess Medical Center. For advice about your medical care, consult your doctor.
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