Ostomy Leaks & Overcoming Public Anxiety

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, when almost always what is unreliable is the fit of the appliance. Fit problems have specific causes and specific fixes, and 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 and cut or mould 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, useful when the stoma is flush with or retracted below the skin. Convexity is often misunderstood as a last resort; a WOC nurse can advise whether it suits you.
• A belt hooks to the appliance and 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. Holding a hand over the barrier for a minute after application helps the adhesive mould.

Sore, weeping peristomal skin creates a loop: it stops the barrier sticking, that causes leaks, and 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, repeating 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 for working 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, which is why leaks cluster overnight and at the end of long journeys.

With an ileostomy, output starts loose and should thicken to roughly paste consistency over time. Raw fruit and vegetables, sugary foods, milk, fruit juice and prune juice loosen it. Eggs, cabbage, broccoli, onions, fish, beans, cheese, fizzy drinks and alcohol are common gas producers, and eating regularly in smaller amounts, not skipping meals, and avoiding straws, gum and smoking all reduce 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, with increased thirst, dry mouth and reduced urine as the warning signs. Pouch filters, deodorant drops and oral deodorising products address odour.

UOAA's advice is to always carry everything needed for a complete change, kept away from heat and humidity. A workable version: a barrier and pouch, 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 — disabled and family toilets have a sink inside the cubicle, which is the thing that matters — and do one full change at home against a clock so you 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