Ostomies and Colorectal Cancer
For many people facing colorectal cancer, treatment includes a word that can feel frightening at first: ostomy. It sounds clinical and unfamiliar, but for millions of survivors worldwide, it is simply part of daily life, and often the thing that made survival possible in the first place.
What Exactly Is an Ostomy?
An ostomy is a surgically created opening, called a stoma, that reroutes waste from the digestive system to the outside of the body when part of the bowel has been removed or needs time to heal. A pouch worn over the stoma collects that waste. For colorectal cancer patients, this usually takes the form of a colostomy (from the colon) or an ileostomy (from the small intestine). Some ostomies are temporary, giving the bowel time to recover before it is reconnected. Others are permanent, particularly when the cancer is located low in the rectum or when reconnection would compromise bowel function.
How Common Is It?
Colorectal cancer remains one of the most diagnosed cancers worldwide, with GLOBOCAN estimating close to 2 million cases annually. A meaningful share of those patients will need an ostomy at some point in treatment. Research on ostomy formation shows wide variation depending on tumor location, stage, and surgical approach, with published cohort studies reporting colostomy rates ranging from 6% to 47%, and ileostomy rates ranging from 5% to 69%.
Estimates suggest roughly 1 million people in the United States and 1 million in China live with an ostomy, along with about 700,000 in Europe, 400,000 in Brazil, 200,000 in Japan, and 60,000 in South Africa. It's important to note that these are estimates, not comprehensive registry data, and in many countries reliable data simply do not exist. That gap is itself an advocacy issue: without good data, it is harder for governments and health systems to understand the need, allocate resources, and build policies that ensure equitable access to ostomy care.
The Daily Reality: Pouch Care
Living with an ostomy means learning a new rhythm of self-care. Most people change their full pouching system every two to four days, though this varies by stoma type, output consistency, and skin sensitivity. Ileostomies, which produce more frequent and liquid output, are often managed with drainable pouches emptied several times a day and changed less often than colostomy pouches, which sometimes use closed-end systems changed once or twice daily. There is no single correct schedule. Ostomy care nurses generally recommend watching the skin around the stoma, since irritation or a loosening seal are the real signals that it is time for a change.
Disparities That Deserve More Attention
Beneath these clinical basics sit access gaps that GCCA's global advocacy work keeps returning to.
The first is a global disparity in who ends up with an ostomy at all, and how late that diagnosis comes. An international study spanning 242 hospitals in 57 countries found that patients in low-resource countries were far more likely to present with a perforated bowel than patients in high-resource countries, and far more likely to end up with an end colostomy rather than a reconnected bowel. Even after accounting for how advanced or urgent each case was, being in a lower-resource country was independently linked to more than three times the odds of receiving a colostomy. The World Health Organization's World Cancer Report similarly notes that a more advanced stage at diagnosis, a lower chance of curative treatment, and a higher risk of a permanent stoma cluster together in low-income countries. Weaker screening infrastructure, longer delays between symptoms and diagnosis, and fewer surgeons trained in bowel-preserving techniques all contribute, and the countries facing these gaps are often the same ones with the least ostomy-specific support once a stoma is created.
The second is disparity in access to the supplies that make ostomy life manageable. Most ostomates need their full pouching system changed every two to four days, which adds up to roughly 15 to 60 pouches a month depending on stoma type and routine, and how much of that gets covered varies enormously by country. Some health systems set no cap at all and pay the full cost; others tie coverage to a fixed monthly quantity, a cash allowance, or an informal limit that patients have had to fight in court to overturn. (See our companion piece, "How Stoma Bag Coverage Compares Around the World," for a country-by-country look.) Manufacturer-sponsored access programs exist precisely because gaps like these are real, but they cannot fully replace equitable, built-in coverage.
Why This Matters for Advocacy
An ostomy is a life-sustaining tool that deserves the same attention to equity that GCCA brings to screening access, biomarker testing, and treatment. Understanding what an ostomy is, how common it is, and where the system fails patients is a first step toward closing those gaps for the millions of people worldwide who live with one every day.