Living With an Ostomy: Daily Life and Body Image

Knowing normal is what lets you spot abnormal, and nobody tells you this clearly enough in hospital.

MedlinePlus describes a colostomy or ileostomy stoma this way: "the surface of your stoma is the lining of your intestine. It will be pink or red, moist, and a little shiny." A urostomy stoma is described as "pinkish-red and moist," and it should "stick out slightly from your skin."

Some things that look alarming are normal. A little mucus. A small amount of bleeding from the stoma surface when you clean it. The stoma has no nerve endings, so touching it does not hurt.

Some things are not normal. Call your provider if the stoma turns purple, gray, black, or white, if it becomes dry, if it pulls away from the skin, or if its size changes suddenly.

Almost every ostomy problem, from leaks to sore skin to social anxiety, traces back to the seal.

MedlinePlus gives the routine:

• Empty the pouch when it is about one third full. Do not wait until it is heavy. Weight drags on the seal.
• Change the pouch every two to four days, or as often as your nurse says.
• Use the measuring card to find the circle that matches your stoma. Trace it, cut it, and make sure "the cut edges are smooth."
• Wash the skin with warm water and pat it dry before attaching the pouch.
• If a patch of skin is wet or open, sprinkle stoma powder on that part only. Let it air dry for one to two minutes.
• Use stoma paste or a barrier ring around the opening.
• Hold the wafer in place for a few minutes. A warm washcloth held over the seal helps it stick.

Two product rules matter. Avoid anything alcohol-based, because it over-dries the skin. Avoid anything oil-based, because the pouch will not stick.

If leaks keep happening despite all this, the answer is usually a different product, not more effort. Ask for an ostomy nurse.

MedlinePlus notes that "after surgery, the stoma will be swollen. It will shrink over the next several weeks."

This catches people out. The size you cut in week one will be too big by week five, and a gap between the wafer and the stoma is exactly where leaks and sore skin start.

Re-measure every change for the first six to eight weeks. Do not order a large box of pre-cut wafers until the size has settled.

Start with the reassurance. MedlinePlus states that "people who have had an ileostomy can most often eat a normal diet."

Then the specifics. MedlinePlus lists foods that increase odor: "onions, garlic, broccoli, asparagus, cabbage, fish, certain cheeses, eggs, baked beans, Brussels sprouts, and alcohol." Foods more likely to cause gas include cucumbers, radishes, sweets, and melons, along with fizzy drinks.

You do not have to avoid these. Most people simply learn to time them. Odour-producing foods on a quiet evening at home, not before a wedding.

Two instructions carry real weight. "Chew your food well." And drink: MedlinePlus advises "6 to 8 cups (1.5 to 2 liters) of fluids every day," and warns that you "can get dehydrated more easily if you have an ileostomy."

Dehydration is the most common reason people with a new ileostomy end up back in hospital. Learn the signs now: dry mouth, urinating less often, and feeling lightheaded or weak.

You can bathe. MedlinePlus is unambiguous: "you may take a bath or a shower as air, soap, and water will not hurt your stoma and water will not go into the stoma."

That includes swimming pools and the sea, with the pouch on. Empty it beforehand. Some people add waterproof tape around the edges of the wafer for extra security, and swimwear with a higher waist hides the pouch entirely.

Ask your surgeon about heavy lifting and contact sport, since the answer depends on your operation and the risk of a hernia around the stoma.

Nothing needs to be special, but a few choices make daily life easier.

Waistbands that sit above or below the stoma rather than directly across it reduce pressure and rubbing. Patterned or textured fabric hides outlines better than thin plain fabric. Emptying at one third full, rather than waiting, keeps the profile flat under clothes.

Pouch covers, support belts, and wraps exist and are widely used. An ostomy nurse can tell you what is available and what your insurance covers.

The airport is the part people dread most, and TSA has published rules that make it manageable.

Call ahead. TSA Cares "is designed to assist travelers with disabilities and medical conditions and others who may need additional assistance with screening." The number is (855) 787-2227, and TSA asks you to call at least 72 hours before departure. They can arrange a Passenger Support Specialist, described as "a TSA officer who has received specialized training, including how to effectively assist and communicate with individuals with disabilities or medical conditions."

At the checkpoint, you "may provide the officer with the TSA notification card or other medical documentation to describe your condition." You do not have to explain out loud in front of a queue.

Officers may swab your hands and external medical devices to test for explosives. That is routine.

On supplies: "TSA allows larger amounts of medically necessary liquids, gels, and aerosols in reasonable quantities for your trip, but you must declare them to TSA officers at the checkpoint for inspection." Take them out of your bag for separate screening. TSA notes you are not required to put them in a zip-top bag.

Pack all ostomy supplies in your carry-on, not the hold. Take at least twice what you expect to use. Pre-cut some wafers before you fly, since scissors are a checkpoint problem.

Practical arrangements usually matter more than disclosure.

Keep a full change kit at work, including a spare set of clothes in a bag. Find out where the accessible or single-occupancy restroom is on your first day back. Ask about somewhere to store supplies out of sight.

You are not obliged to tell colleagues. Many people tell one person, so that someone knows if they need to leave a meeting quickly. If your job involves heavy lifting, discuss it with your surgeon and occupational health before you return.

NCI lists ostomies among the body changes cancer treatment causes, alongside scars, hair loss, and weight change. It says something worth reading twice: "feelings of anger and grief about changes in your body are natural."

The practical steps NCI suggests are unglamorous and they work.

• Talk openly with your partner about what you want and what worries you.
• Use non-sexual touch. NCI specifically names "holding, hugging, and cuddling."
• Plan time together away from distractions.
• Consider seeing a sex therapist. This is a real profession, and oncology teams do refer to it.
• Counseling and support groups help with the feelings, not just the mechanics.

Practical things that help: empty the pouch first, use an opaque cover or a wrap, choose positions that keep pressure off the wafer, and pick a time of day when output is lower.

NCI's closing point applies here as much as anywhere: "Know that you are not alone in how you feel. Many others have similar feelings and experiences."

Call your provider for:

• A stoma that turns purple, gray, black, or white.
• A stoma that pulls away from the skin, or changes size suddenly.
• Skin around the stoma that is red, raw, swollen, itchy, or has sores or pustules.
• Repeated leaking that new products have not fixed.
• Signs of dehydration: dry mouth, less urine, lightheadedness, weakness.
• With an ileostomy, cramping in the belly with a swollen stoma and nausea, which can mean a blockage.
• With an ileostomy, a bag that "stays empty longer than 4 to 6 hours."
• With a urostomy, less urine than usual, fever, pain, or a bad odor.

• Ileostomy: Caring for Your Stoma — MedlinePlus, National Library of Medicine
• Changing Your Ostomy Pouch — MedlinePlus, National Library of Medicine
• Ileostomy and Your Diet — MedlinePlus, National Library of Medicine
• Ileostomy: Discharge — MedlinePlus, National Library of Medicine
• Urostomy: Stoma and Skin Care — MedlinePlus, National Library of Medicine
• Passenger Support and TSA Cares — Transportation Security Administration
• Special Procedures for Travelers With Medical Conditions — Transportation Security Administration
• Self-Image, Sexuality, and Cancer — National Cancer Institute