Removing the stigma of a surgery

A year and a half ago, my 21-year-old brother, Matthew, was diagnosed with ulcerative colitis, an autoimmune disease of the bowel. His bowel was attacking itself, and it became so damaged that there was a serious risk of a rupture.

There was no choice in the matter: He had to undergo lifesaving surgery. His colon was removed, and his small intestine was connected to an exit created on his abdomen, from which all his waste would exit into what's commonly known as a colostomy bag.

When I tell this story to friends or others, they often react with polite disgust or a quiet "I'm sorry," followed by a change of topic. It's difficult to resist reminding them that they don't go to the bathroom just to hang out.

There are several different types of ostomy procedures. A colostomy is an opening made in the colon after a portion of it is removed. An ileostomy is an opening in the small intestine that may be necessary after removal of all or part of the colon. It's essentially a matter of human plumbing: There has to be a way in and a way out, with everything connecting in between.

These operations often give the patient a small new opening on the side of the abdomen. The opening is roughly the size of a quarter and looks like the inside of one's mouth.

The bag typically attached to such an opening is smaller than half a sheet of paper and lies flat against the stomach. With a loose-fitting T-shirt over it, it's impossible to know it's there. Exercise, including swimming, is still possible, as is sex.

The United Ostomy Associations of America estimates that 75,000 ostomy surgeries are performed each year in the United States, and that 750,000 Americans have an ostomy. (Ulcerative colitis and Crohn's disease, which often necessitate ostomies, affect approximately one million Americans.) This means that almost one in every 500 Americans has undergone ostomy surgery.

So if life isn't all that bad with a colostomy bag, and if there are so many living that life, why is it so taboo?

It's understandable that the topic of feces, and the exit it leaves from, is hardly suitable for dinner party conversation. But it is also something that should not be altogether avoided. The lack of frankness and the embarrassment regarding matters of the bowel leave many to suffer in silence, undiagnosed.

My brother is a good example. Due to a combination of embarrassment and machismo, he failed to see a doctor for more than a month, by which point it was too late to salvage any of his colon. The tragic truth is that there are many others like him.

But from what I've found, once you get people talking about their ostomy experiences, a whole community opens up. From charities such as the United Ostomy Associations to Facebook groups with names such as "No colon, still rollin' " and "I swear my ostomy bag makes me look sexier," there is a wide network of support for those suffering.

And it's not as if the whole experience is doom and gloom, either. Many freely joke about their colostomy bags, and some even have a nickname for them. (My brother's is "Jabba.") Matthew explains, "Personally, I find talking about it makes it easier to deal with. If everyone knows about it, it's not a dirty little secret. People who knew me before still know me as who I am, not what I have."

This year alone, my brother graduated from Northumbria University, in Newcastle, England, with high honors, and he ran a half-marathon. The more he achieves in life, the smaller the bag seems to become.

The difficulty lies in building a bridge between what the insiders know about ostomies and what the rest of the world does. It is only when I push past the initial, "My brother poops into a bag" part of the story, and explain how he still runs, goes out, and gets girlfriends, that people begin to listen a little.