Living With an Ostomy: Daily Life and Body Image

This page is for anyone living with a new colostomy, ileostomy, or urostomy after cancer surgery. A stoma is the opening on your belly where waste leaves the body into a pouch. The page starts with the basics of care, then covers food, clothes, travel, work, and intimacy.

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 when you clean the stoma. Bleeding more than usual is a reason to call.

Some things are not normal. Call your provider if the stoma:

• Turns purple, gray, black, or white
• Becomes dry
• Pulls away from the skin
• Changes size 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.
• A warm washcloth held over the seal can help it stick.

MedlinePlus says to avoid products with alcohol or oils around the stoma.

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. A gap between the wafer and the stoma is exactly where leaks and sore skin start.

Ask your ostomy nurse how often to re-measure while it shrinks, and when it is safe to order pre-cut wafers. MedlinePlus also says to call your provider if the stoma does not fit as well as it did before.

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.

MedlinePlus also notes that foods that caused trouble before surgery may still cause trouble. Your ostomy nurse can help you work out what suits you.

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."

Learn the signs of dehydration now: dry mouth, urinating less often, and feeling lightheaded or weak. Call your provider if you notice them.

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."

MedlinePlus does not cover swimming. Ask your ostomy nurse about pools and the sea.

Ask your surgeon about heavy lifting and contact sport. The answer depends on your operation.

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

MedlinePlus advises emptying the pouch when it is about one third full. For clothing, pouch covers, belts and wraps, ask an ostomy nurse 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, TSA says you can tell officers about your condition "verbally, by using the TSA Notification Card or by providing medical documentation." It also says an ostomy pouch can be screened "without having to remove or expose" it.

TSA says some screening may include a self pat-down of a medical device and a test of your hands for explosives residue.

On supplies: "TSA allows larger amounts of medically necessary liquids, gels, and aerosols in reasonable quantities for your flight, but you must declare them to TSA officers at the checkpoint for inspection." TSA's pages do not give a packing list for ostomy supplies. Ask your ostomy nurse what to bring and how much.

Planning ahead can make the return easier. Ask your ostomy nurse about what to keep with you at work. If your job involves heavy lifting, discuss it with your surgeon 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:

• Ask your ostomy nurse for practical tips on pouch covers, wraps and timing.

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."

Most days with an ostomy are routine. Call your provider for any of these:

• A stoma that turns purple, gray, black, or white.
• A stoma that is swollen, pulling in below the skin level, pulling away from the skin, or changing size suddenly.
• Bleeding from the stoma that is more than usual.
• A fever over 100.4 F (38 C), vomiting, or a bad-smelling discharge.
• Skin around the stoma that is red, raw, swollen, itchy, or has sores or pustules.
• Repeated leaking, or a stoma that no longer fits well.
• 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. MedlinePlus says not to just take a laxative.
• With an ileostomy, a bag that "stays empty longer than 4 to 6 hours." MedlinePlus says to contact your provider right away.
• 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