A stoma is not a disease itself. It is a surgically created opening in the abdomen that reroutes waste from the intestines or urinary tract to the outside of the body, where it collects in a wearable pouch. When people search for “stoma disease,” they’re typically looking for one of two things: the diseases that lead to stoma surgery, or the medical complications that develop around a stoma after surgery. Both are common concerns, and both deserve a clear explanation.
What a Stoma Is and Why It’s Created
During stoma surgery, a surgeon makes an opening in the abdominal wall, pulls a section of intestine or ureter to the surface, and stitches it in place. Waste then exits through this opening rather than following its normal path. More than 130,000 intestinal stomas are created each year in the United States alone.
There are three main types. A colostomy connects the opening to the colon and is common after rectal cancer surgery or severe diverticulitis. An ileostomy connects to the small intestine and is often used for inflammatory bowel disease, including Crohn’s disease and ulcerative colitis. A urostomy reroutes urine from part of the urinary tract, typically after bladder cancer treatment.
Some stomas are temporary, designed to protect a healing surgical connection further down the intestine. Others are permanent when the diseased section of bowel has been completely removed. In children, stomas sometimes manage congenital conditions like Hirschsprung’s disease, where nerve cells are missing from part of the colon.
Diseases That Lead to Stoma Surgery
The most common reason for stoma creation is colorectal cancer, particularly when tumors sit low in the rectum and the entire rectum must be removed. Inflammatory bowel disease is another major driver. Ulcerative colitis that doesn’t respond to medication may require removal of the entire colon, and severe Crohn’s disease with deep abscesses or fistulas around the anus can make a stoma the safest option.
Beyond cancer and IBD, stomas are created for perforated diverticulitis with widespread infection, traumatic bowel injuries, bowel ischemia (where blood supply to the intestine is cut off), fecal incontinence that hasn’t responded to other treatments, and inherited conditions like familial adenomatous polyposis, which causes hundreds of precancerous polyps in the colon.
Skin Problems Around the Stoma
Peristomal skin complications are the most frequent issue people with stomas face. Studies report that anywhere from 36% to 73% of stoma patients develop skin problems at some point, with some large surveys putting the number even higher.
The most common is contact dermatitis, an irritation caused by stool or urine leaking under the adhesive wafer of the pouch. This affects roughly a third of patients and often appears within the first two to three weeks after surgery. The skin becomes red, sore, and itchy. Moisture-associated damage, where prolonged wetness breaks down the skin, affects about half of patients who develop skin complications. Fungal infections and folliculitis (inflamed hair follicles) account for a smaller but still significant share.
Proper pouch fit is the single most important factor in preventing these problems. Pouches should be changed every two to four days and emptied when about one-third full. A pouch that doesn’t seal well against the skin allows output to seep underneath, which starts the cycle of irritation.
Structural Complications
The tissue and muscle around a stoma can change over time, leading to structural problems that range from manageable to surgically urgent.
Parastomal hernia is by far the most common structural issue, with an incidence reported around 50%. The abdominal wall weakens at the stoma site, and a bulge forms as intestine pushes through. Most hernias develop within the first few years, though they can appear as late as 20 years after surgery. Some researchers suggest that virtually all stoma patients would develop a hernia if followed long enough. Many parastomal hernias cause no symptoms beyond a visible bulge, but larger ones can make pouch fitting difficult and occasionally trap a loop of bowel.
Stoma prolapse, where the intestine telescopes outward through the opening, occurs in 1% to 16% of cases. It’s more common with loop stomas than end stomas, and about half of people with a prolapsed colostomy also have a parastomal hernia. Prolapse looks alarming but isn’t always an emergency unless the protruding bowel becomes swollen, discolored, or can’t be gently pushed back in.
Stoma retraction, where the stoma pulls below the skin surface, happens in 1% to 6% of cases. It’s caused by tension on the bowel, poor site selection during surgery, or reduced blood flow. Retraction makes pouch sealing difficult and often requires surgical revision.
Rare but Serious: Peristomal Pyoderma Gangrenosum
Peristomal pyoderma gangrenosum is a painful, rapidly spreading ulcer that develops around the stoma. It’s rare (roughly 1.4% of stoma patients) but disproportionately affects people with inflammatory bowel disease. The ulcer has distinctive dark purple, undermined borders and gets worse with trauma or irritation from pouch leakage.
This condition is notoriously difficult to diagnose because no standardized diagnostic test exists, and it can look like a severe skin irritation or infection. Treatment typically involves anti-inflammatory medications, and unlike most skin wounds, surgical debridement can make it worse due to a phenomenon where trauma triggers new ulcers. In some cases, closing the stoma or treating the underlying bowel disease resolves it.
Diversion Colitis
When a section of bowel is bypassed by a stoma, the unused segment can become inflamed. This is called diversion colitis, and it happens because the diverted bowel no longer receives the short-chain fatty acids produced by normal bacterial fermentation. These fatty acids are the primary fuel source for colon cells, so without them, the lining becomes inflamed and the local bacterial balance shifts toward harmful species.
Symptoms include mucous or bloody discharge from the rectum, cramping, and a persistent urge to have a bowel movement even though stool is being diverted. The most effective treatment is reversing the stoma and reconnecting the bowel. For people with permanent stomas, enemas containing short-chain fatty acids or anti-inflammatory compounds can reduce symptoms, though no single standard therapy has been established.
High-Output Stomas and Dehydration
Ileostomies carry a particular risk of high output, defined as more than 1.5 to 2 liters of fluid leaving the stoma in 24 hours. At this volume, the body loses water and sodium faster than most people can replace by drinking. Signs include thirst, dizziness, dark urine, fatigue, and muscle cramps.
High output is most common in the early weeks after surgery but can be triggered later by infections, new medications, or dietary changes. Monitoring pouch output and maintaining adequate fluid and electrolyte intake is essential for anyone with an ileostomy.
Food Blockages
Ileostomies are also vulnerable to food bolus blockages, where poorly chewed or high-fiber foods lodge at the narrow stoma opening. Early signs include sudden watery spurting from the stoma (liquid squeezing past the obstruction), bloating, cramping, strong-smelling output, and swelling around the stoma. If the blockage persists, output stops completely, and nausea and vomiting follow.
Foods most likely to cause blockages include raw vegetables, unpeeled fruits, corn, mushrooms, coconut, celery, nuts, seeds, popcorn, dried fruits, and meats in casings like hot dogs. Chewing thoroughly and introducing high-fiber foods gradually reduces the risk considerably.
Stoma Necrosis
In rare cases, the blood supply to the stoma is compromised during or shortly after surgery, causing the tissue to die. Signs of ischemia typically appear within 24 hours of the operation. The stoma turns from its normal pink-red color to a dusky purple, dark brown, or black. Minor discoloration may be monitored carefully, but severe necrosis requires emergency surgical revision to prevent further tissue death and infection.
Psychological and Emotional Impact
Living with a stoma affects more than the body. Research shows that about 50% of stoma patients report higher-than-normal anxiety levels, and 16% experience mild to moderate depression. Roughly 60% encounter psychosocial difficulties including reduced self-confidence, avoidance of social activities, and withdrawal from intimate relationships. Body image disturbance is common, particularly in the early months, and permanent stomas are associated with lasting changes in how people perceive their appearance and sexual functioning.
These numbers highlight that emotional adjustment is a normal and expected part of living with a stoma, not a sign of personal failure. Support groups, stoma care nurses, and mental health professionals who understand the unique challenges of ostomy life can make a meaningful difference in quality of life over time.