Ostomies by the numbers

Every time I trip across ostomy statistics or surveys, my interest is piqued. I guess like many of us, I never knew anyone with an ostomy before my surgery. And even now, every ostomate I know is a virtual acquaintance of some kind. So it can all feel a little surreal at times. Maybe that’s why numbers hold such an appeal – they validate the experiences we all share. As they say, there’s comfort in numbers.

Here are some numbers I’ve found interesting:

  • In the western world, roughly 1 in 500 people have an ostomy.
  • That’s more than 500,000 in the US, 100,000 in the UK, and 70,000 in Canada.
  • One of the most widely quoted sources of ostomy statistics claims that the average age of an ostomate is 68.3 years.
  • The same study cited a 1998 consumer survey showing that 57% were female.
    Numbers can vary depending on the source, but they generally agree that about 55% are colostomies, 35% ileostomies, and 15% urostomies.
  • About 75 people responded to a recent survey in a Facebook group (so not scientific, reliable data obviously, but still interesting).

55% had ileostomies. They’d had their stomas for an average of 10 years each (ranging from 3 months to 45 years).

45% had colostomies. They’d had their stomas for an average of 4 years (ranging from 3 months to 27 years).

    • There were more ileostomates than colostomates in that survey, even though there are many more colostomies out there. It may be that since ileostomies tend to be more problematic, those folks are more likely to participate in online support groups.
  • The most common causes of ostomies are colorectal cancer (about 35%) and IBD, including ulcerative colitis and Crohn’s disease (about 15%).
  • Where you live has a big impact. For example, in 2007, an international ostomy association reported that 80-95% of ostomates in Russia were using improvised or homemade ostomy items (!!).
  • In that report, ostomies were said to be the most socially accepted (no discrimination in the workplace, not a “taboo” subject, etc.) in Australia, Canada, Israel, Italy, Netherlands, New Zealand, Poland, and the UK.
  • On average, both the ileostomates and colostomates changed their appliances every 4-5 days (ranging from several times a day to every 8 days).
  • Another online survey found that about 50% of the respondents stand at the toilet when changing their appliances. Some sit on the toilet to empty, but then stand to change. Others sit on the toilet (frontwards or backwards) for both. The rest sit on a chair or kneel in front of the toilet, or do their changes while lying on a bed or recliner.
  • Polls in other online groups suggest that about 2/3 of ostomates wear 2-piece appliances, and about 1/3 wear 1-piece.
  • I remember once reading that 88% use a drainable pouch vs 12% who use a closed one. That fits with what I read in other support group posts – where the majority seem to favour drainable pouches.
  • A brochure produced by a Danish ostomy supply company referenced a UK study that found 52% of colostomates experienced pancaking, and a study from the Netherlands that found 70% of colostomates and 50% of ileostomates reported the same problem. Both studies found there was a higher incidence of pancaking with 1-piece pouches.
  • A recent study of parastomal hernias followed patients for 5 years after ostomy surgery. About 60% of the female patients (vs 18% of male patients) and 57% of all patients over 60 (vs 28% of patients under 60) developed a hernia within that period.
  • Another study reported that up to 78% of ostomy patients develop a parastomal hernia, typically within 2 years of their surgery.
  • I recently polled a Facebook group I belong to, asking about members’ access to stoma nurses. About 50% said they have a nurse they can see as needed, within a reasonable delay; 25% technically have access to a nurse but face serious obstacles – like distance (sometimes hundreds of miles), health insurance (particularly in the US), or long waits (sometimes several weeks); and another 25% have no access to a stoma nurse at all.
  • Most ostomates seem to have adjusted well. In yet another online poll, 91% of respondents said they either love it (for saving their lives) or have at least learned to live with it. Only 6% said they “hate the bloody thing!”

So … putting these numbers together, this snapshot emerges of the typical ostomate:  She’s a woman in her mid-to-late 60s, living with a colostomy as a result of colorectal cancer. She’s had her stoma for about 4 years. She wears a 2-piece appliance with a drainable pouch, which she changes every 4-5 days while standing in front of the toilet. She has a parastomal hernia and experiences occasional pancaking, but with the help of a stoma nurse, she’s learned to live with her ostomy. And she’s doing fine.

This pretty well describes me to a T. Geez, I started out feeling alone in the world and suddenly find myself reduced to a stereotype. You can’t win!