Reader Rita Fletcher wrote to the Weekly after we ran a story about an Auckland woman’scolostomy bag medical mishap. Rita, who wears a colostomy bag herself, sympathised with the woman’s plight, but wants others to know that living with a bag isn’t always a terrible experience. She inspired me to look into what it involves.

When it comes to modern medical breakthroughs, ostomies are right up there with pacemakers and organ transplants. Most people who have the surgery – to cut a hole into the abdomen to allow their bowel to empty – probably wouldn’t have survived without the surgery, which provides a way of safely removing waste from the body when the digestive system can’t do it the usual way.

Nevertheless, you don’t hear too many people saying, “Gosh, I’m so glad I’ve got a colostomy bag!”

That’s partly due to the fact that bowel function is simply not the kind of subject people discuss openly. Many ostomates – that’s the correct term for a person who wears an ostomy appliance such as a colostomy pouch – are understandably shy about admitting they have one. But while nobody actually wants to wear a pouch, they are life-savers and having one doesn’t mean that normal life is over.

Marie Buchanan, an ostomy clinical nurse specialist in Auckland, says most people who have them find they are able to get on with everyday activities and even play sport. “I’ve had rugby players, netball players, there’s a guy who kayaks… they don’t need to stop doing many things.

“In some cases, people find they now have a better quality of life. If they’ve had a disease like Crohn’s or inflammatory bowel disease, they may have been going to the toilet 20 or 30 times a day. Having an ostomy can be like giving them back their lives.”

But being told you need one can be scary.

“The biggest fear people tend to have is that the pouch will leak,” says Marie. “It can happen occasionally but it should be manageable.

“Other things people worry about, especially younger people, are body image and sexuality.”

As far as body image goes, nobody needs to know you’ve got a pouch. Pouches can be worn with clothes like hipster jeans and there are smaller ones that can be worn under swimsuits.

And yes, you can still have a sex life, says Marie. “Intimacy is often a big concern but there’s usually no reason why you can’t have a sexual relationship. Women can even get pregnant and have a baby. The important message is that it doesn’t mean you are disabled.”

WHAT IS AN OSTOMY?

An ostomy is a hole surgically created in your abdomen so your small or large intestine can empty their contents into an ostomy pouch or bag. This is attached to your skin with a special adhesive. An ostomy is needed when something goes wrong with your digestive system – usually due to disease, injury or a congenital defect – and you can’t rid your body of waste by going to the toilet.

An ostomy to empty your small intestine (or ileum) is called an ileostomy, while a colostomy brings the large intestine, or colon, to the surface of the skin. Urine can be removed from the body by connecting the ureters (the tubes that link the kidneys to the bladder) to a hole in the abdominal wall. This is called a urostomy.

WHAT IS A STOMA?

A stoma is the actual end of the small or large intestine that sticks out through the abdomen after someone has had ostomy surgery. A stoma isn’t painful as it does not have nerve endings so it can’t send pain signals to the brain.

ARE STOMAS ALWAYS PERMANENT?

Not necessarily. In some cases, an ostomy and stoma are used while the body is recovering after treatment for disease or infection. Once the digestive system has healed and is able to work correctly again, the ostomy and stoma may no longer be needed and normal function can resume. Recent advances in surgery techniques that can re-jig the digestive system mean there are lots more cases of temporary stomas

HOW DOES THE POUCH WORK?

Your bowel movements empty naturally into the pouch – you have no control over this. How often this happens depends on several factors, including the type of ostomy you have and your diet. You then empty or change the pouch as required.

A pouch usually lasts around two days. They are supplied free by your district health board, which will courier them to your door.

CASE STUDY

Canterbury pensioner Rita Fletcher (77) wrote to the Weekly about her experience of having a colostomy bag:

“Three years ago, I fell and broke three vertebrae and ruptured my bowel. When I woke up in intensive care three days later, the dreaded bag was attached and I was told at my post-operative check-up that it was to be a permanent fixture. You think your life has ended, but it isn’t as bad as you expect. It took me a while to adjust to the bag but I found that getting used to wearing glasses and dentures, as well as just getting used to being older, took time too.

I had tremendous help from the hospital at first, and later from stoma nurses, who are always available to help. Most cities also have an Ostomy Society. There are times when having a colostomy pouch can be a pest but, in truth, it has limited me very little. I go to the gym twice a week with no problems and have continued on with my life. Not that many years ago, and no doubt in some countries still, there were no colostomies and death would be inevitable. So thanks to our bags, life is still enjoyable.”

Well-known ostomates include the Queen Mother, Bob Hope and Fred Astaire.