How Many People Have an Ostomy? Prevalence and Statistics

Worldwide, hundreds of thousands of people live with a colostomy, ileostomy or urostomy, but there is no single global register. In the United Kingdom, clinical and charity estimates commonly put the number of people living with a stoma in the low hundreds of thousands, with many thousands of new stomas formed each year. Figures elsewhere vary with population size, disease patterns and surgical practice. All published totals are estimates rather than complete counts.

Why published totals are always estimates

There is no worldwide census of people with a stoma. Most countries do not keep a complete, continuously updated register of everyone living with a colostomy, ileostomy or urostomy. Hospital statistics usually record operations, not how many people still have a stoma years later. Temporary stomas are often reversed. Some people have a stoma formed more than once in a lifetime. Others die of the underlying condition. Community nursing caseloads miss people who have moved, been discharged from follow-up, or were never referred.

For that reason, every widely quoted total is an estimate. Incidence (new stomas formed in a given year) and prevalence (people living with a stoma at one point in time) answer different questions and should not be mixed up. A health system can record many operations yet have a lower long-term prevalence if a large share of stomas are temporary.

Round figures are best read as an order of magnitude, not as a personal prediction. A stoma care nurse or clinician can put local surgical practice into context.

How common is a stoma?

Bowel and urinary stomas are uncommon in the general public but everyday work in colorectal, urology and inflammatory bowel disease services. In a country the size of the United Kingdom, professional estimates of people living with a stoma typically sit in the low hundreds of thousands. That is a small fraction of the population, yet a large enough group to need specialist nursing, ongoing appliance provision and peer support.

The United Kingdom and Europe

NHS overview pages on colostomy and ileostomy describe these operations as established treatments and have cited several thousand colostomy procedures and several thousand ileostomy procedures each year in England. Those figures are activity snapshots. They do not count every stoma formed in Scotland, Wales and Northern Ireland, they do not separate temporary from permanent stomas, and they are not the same as the number of people who will live with a stoma for the rest of their lives.

Elsewhere in Europe, clinical reviews of intestinal ostomy treat stoma formation as a standard outcome of a subset of colorectal and urological operations. Smaller countries tend to report tens of thousands of people with a stoma; larger countries report more. Head-to-head comparison is unreliable because definitions differ: temporary versus permanent, small bowel versus colon, urinary conduits, and whether a reversed stoma is still counted.

Other regions

In the United States, the National Institute of Diabetes and Digestive and Kidney Diseases describes ostomy surgery of the bowel as a recognised treatment when the intestine must be diverted. Clinical overviews commonly discuss annual new ostomy operations in the tens of thousands to around a hundred thousand, and a living population of people with a stoma numbered in the hundreds of thousands. These remain estimates.

In many lower-income settings, published data are sparse. Access to elective colorectal surgery, cancer screening and specialist stoma care varies, so both true prevalence and what is recorded can differ from Western European patterns. Global grand totals that circulate online are often extrapolations and should be treated with caution.

Who is most likely to have an ostomy?

A stoma can be formed at any age. Newborns and children may need one for congenital conditions such as anorectal malformation or Hirschsprung disease, or for severe inflammatory bowel disease. Adults may need one after surgery for bowel cancer, Crohn’s disease or ulcerative colitis, diverticular disease, obstruction, perforation, ischaemia, trauma, fistula, or faecal incontinence that has not responded to other treatment. A urostomy is usually created when the bladder is removed or cannot safely store or empty urine, most often related to bladder cancer or to congenital or neurological urinary problems.

Because colorectal cancer and diverticular disease become more common with age, older adults make up the largest group of people with a bowel stoma in high-income countries. Ileostomies for inflammatory bowel disease are seen more often in younger and middle-aged adults. Paediatric stomas are less numerous but clinically important, and children should not be left out of the picture.

Differences between men and women follow the underlying disease rather than the stoma itself. Some surgical series report more men among rectal-cancer colostomies and a different mix in diverticular or pelvic operations. The pattern is not uniform, and population ratios should not be used to judge any one person’s risk.

Types of ostomy and what the mix usually looks like

Colostomies and ileostomies greatly outnumber urostomies in most published series. Within bowel stomas, the balance has shifted over recent decades. Sphincter-preserving rectal surgery often uses a temporary loop ileostomy to protect a low join in the bowel. End colostomy remains common when the rectum is removed without reconstruction, when the remaining bowel cannot be joined, or in some emergency operations.

A loop stoma is frequently intended to be temporary; an end stoma is more often planned as permanent. Intention and outcome do not always match. Reversal may be delayed or abandoned because of fitness, complications, recurrent disease, or personal choice. Counts that include only permanent stomas therefore understate how many people live with a stoma for months or years.

Why the numbers keep moving

Trends pull in opposite directions, so evidence on whether ostomy prevalence is rising or falling is mixed.

Cancer screening, earlier diagnosis and better survival mean more people live for years after rectal or bladder surgery, including those with a stoma. An ageing population enlarges the group at risk of colorectal cancer and diverticular complications. Against that, improved medicines for inflammatory bowel disease, wider use of sphincter-preserving operations, and better salvage of some emergencies may avoid a stoma or allow reversal.

Recording also changes. Hospital coding, nursing caseloads and charity membership measure different things. An apparent rise in one dataset may reflect fuller recording rather than more surgery. When reports disagree, the fair conclusion is that the direction of travel is uncertain and probably differs by stoma type and by indication.

What these figures mean if you have a stoma

Population statistics cannot tell you how your stoma will behave, whether it will be reversed, or how you will adapt. They can correct two unhelpful ideas: that nobody else lives this way, and that a stoma is so ordinary it needs no specialist support.

You are not unique in having a stoma, even if you have never met anyone else with one. Stoma care nursing exists because the population is large enough, and the practical issues specific enough, to need dedicated clinicians. Questions about appliances, skin, diet, work, sport, intimacy, pregnancy or reversal are for your stoma care nurse or surgical team, not for a prevalence table.

The bottom line

There is no exact global headcount of people with an ostomy. The best available estimates suggest that in the United Kingdom the number of people living with a colostomy, ileostomy or urostomy is in the low hundreds of thousands, with several thousand new bowel stomas formed in England each year. Other Western countries report figures in keeping with their population size. Totals on the internet vary because they mix incidence with prevalence, temporary with permanent stomas, and different countries’ data. For personal care, consult your stoma care nurse or clinician: statistics describe populations, not one person’s future.