Ostomy Leaks & Overcoming Public Anxiety

This page is for people living with an ostomy who worry about leaks in public. An ostomy is a surgical opening on the belly, called a stoma, that lets waste leave the body into a pouch. The page covers the common causes of leaks, fixes to try, what to carry, and when to get specialist help.

The fear of leaking in public is not irrational. It is a reasonable response to having had it happen. But the fear tends to attach to the wrong thing. People conclude their body is unreliable. Almost always, what is unreliable is the fit of the appliance (the pouch and the sticky barrier that holds it to the skin). Fit problems have specific causes and specific fixes. Working through them methodically is more useful than avoiding leaving the house.

A stoma changes in the weeks after surgery, and again with weight gain or loss. Many people cut from a template made once, months ago, and never revisit it.

Measure with a measuring guide. Cut or mold the barrier to the stoma's actual size and shape. ACS gives the target plainly: the opening should be no more than about 1/8 inch larger than the stoma. Too large, and output sits on skin. Too tight, and the barrier can cut the stoma. Moldable barriers help if the shape is oval or irregular. Re-measure every few weeks early on, and any time your weight shifts.

Skin is rarely flat where you need it to be. Creases, folds, scars and a dip around the stoma all give output a route to travel under the barrier.

• Barrier rings, strips and paste fill those gaps. The WOCN guidance is direct about this. Add them at creases, folds and scars to get a better seal and prevent leaking.
• Convex barriers curve outward to press around the stoma. They are useful when the stoma is flush with the skin, or retracted below it. Convexity is often misunderstood as a last resort. A WOC (wound, ostomy and continence) nurse can advise whether it suits you.
• A belt hooks to the appliance. It takes the weight of a filling pouch off the adhesive.
• Apply on smooth skin. Hold the skin taut, and try standing so the abdomen flattens. Applying while sitting can bake wrinkles into the seal.
• Warm it. Hold a hand over the barrier for a minute after application. That helps the adhesive mold to the skin.

Sore, weeping peristomal skin, meaning the skin around the stoma, creates a loop. It stops the barrier sticking. That causes leaks. The leaks make the skin worse. The break in the loop is the crusting technique. Dust the open or moist area with ostomy powder. Brush off the excess. Then seal it with a barrier film or wipe. Repeat in layers until the surface is dry. For heavy sweating, powder the skin and dab with a barrier wipe before applying.

WOCN's Peristomal Skin Assessment Guide for Consumers is a free tool. It helps you work out what a particular skin problem is and what to do about it.

Empty at one-third to one-half full. A heavy pouch is a mechanical problem. The weight peels the seal off the skin. That is why leaks cluster overnight and at the end of long trips.

With an ileostomy (a stoma made from the small intestine), output starts loose. It should thicken to roughly the texture of paste over time.

Raw fruit and vegetables, sugary foods, milk, fruit juice and prune juice loosen it. Common gas producers are eggs, cabbage, broccoli, onions, fish, beans, cheese, fizzy drinks and alcohol. Eat regularly in smaller amounts, and do not skip meals. Avoid straws, gum and smoking. All of that reduces gas.

Dehydration is a genuine risk without a colon. ACS suggests 8 to 10 eight-ounce glasses of fluid daily, and more when output is high. The warning signs are increased thirst, dry mouth and reduced urine. Pouch filters, deodorant drops and deodorizing products taken by mouth help with odor.

UOAA's advice is to always carry everything needed for a complete change, kept away from heat and humidity. A workable kit holds a barrier and pouch, a ring or paste, adhesive remover and wipes, disposal bags, dry wipes, spare underwear, and a dark top or scarf.

Decide in advance where you would change. Accessible and family restrooms have a sink inside the room, which is the thing that matters. Then do one full change at home against a clock. You will know it takes eight minutes, rather than an unknown eternity.

A shortening wear time, a change in your stoma's appearance, or skin that stays red or sore despite doing everything above are all reasons to call rather than to persevere. UOAA runs an ostomy nurse finder, a support group finder, a virtual ostomy clinic and a helpline on 1-800-826-0826, weekdays 9am to 3pm ET. They also produce a travel and TSA communication card for airport security, which removes one more thing to dread.

• United Ostomy Associations of America — Living With an Ostomy
• American Cancer Society — Ileostomy Care
• WOCN Society — Peristomal Skin Assessment Guide for Consumers
• UOAA — New Ostomy Patient Guide