An Exclusive Club
Only about 500,000 people in America (less than 1% of the population) can say they have an ostomy.
And I’m one of them.
It’s quite an exclusive club. There are ostomy nurses, manufacturers of ostomy supplies, catalogs, support groups . . . it’s a whole subculture. They (we . . . I have to remember that) have our own lingo, our own problems, our own understanding.
I’m gonna make up a bumper sticker: It’s an ostomy thing, you wouldn’t understand.
In the hospital I was greeted and instructed by an ostomy nurse. When I got home I was called by a case manager for my insurance company asking how the ostomy was going; that same day a visiting nurse came to help me with changing the ostomy appliance; the next day I was called by a representative from a manufacturer of ostomy supplies who then hooked me up with a sales rep from a well-known (among us ostomites) ostomy supply catalog. I set up an account. I’m to call either woman if I have any questions or need any help with my ostomy.
This group is tight.
Now I’m flipping through a catalog making a “wish list” of supplies with terms like 12″ drainable pouches, extended wear flat skin barriers (otherwise known as wafers), stoma powder, Karaya paste, and lubricating deodorant. Terms I never thought I’d be using, let alone even know what they mean. There are different kinds of pouches, different kinds of wafers, different kinds of everything. It’s like paging through an L.L. Bean catalog at Christmas time . . . except not.
It’s overwhelming, but I don’t feel alone. I have five different nurses/representatives/experienced ostomites that are just a phone call away waiting to help me.
I’m part of a unique community, one that sticks together because we share a common bond. We are ostomites.
It’s an ostomy thing, you wouldn’t understand. (I love that.)