Caring for Someone With an Ostomy

When you find out that someone you love needs ostomy surgery, a flood of emotions and worries may follow. You worry about your loved one: Will they be able to adjust to living with an ostomy? You worry about yourself: Will you be able to do the care tasks that an ostomy requires? And you might worry about your future together: Will you and your loved one ever be able to travel, or do activities you enjoyed pre-ostomy?

These worries are all normal. The most important thing to know is: You are not alone in your ostomy caregiving journey. Many others have traveled this road, and there are abundant resources available to help you.

Learning the Basics of Ostomy Care

A good first step is taking some time to learn what an ostomy is and how it works.

An ostomy is a surgically created opening in the abdomen that allows waste to drain from the urinary or digestive system through a stoma.

Some ostomies are temporary, put in place long enough to allow the digestive system to heal after a surgery, inflammation or blockage. Others are permanent, performed when a health condition damages the patient’s normal functioning, or when part of the urinary or digestive system isn’t working properly or must be removed.

In most cases, people with an ostomy must wear a pouching system attached to their stoma to collect waste, whether urine or stool. Ostomy care involves applying this pouching system, emptying and changing ostomy bags, and caring for the stoma and the peristomal skin. Caregivers must watch for emerging problems, especially leaks that can damage the peristomal skin.

If you’re caring for a young child or a loved one with physical or cognitive impairments, you may have to perform all aspects of ostomy care yourself. If your loved one is able, they can learn to care for their own ostomy, with some assistance when needed. Our how-to guides can help you get started:

When to Call a Healthcare Provider

Call your wound, ostomy, and continence (WOC) nurse if your loved one has minor skin irritation, or if you have any questions or problems with pouching procedures or leakage.

You should contact your loved one’s healthcare provider right away if you notice:

A change in stoma color, from pink-red to purple, black or pale
The stoma appears dry
An increase or dramatic change in stoma size
The stoma retracting or elongating
Excessive bleeding from the stoma opening
Bleeding between the stoma and skin
Pain or sores on your peristomal skin
Unusual bulging around your stoma
A strong odor from the stoma
Urine that’s bloody or foul-smelling
An absence of bowel movements for more than 2 days
They’re feeling dizzy or lightheaded
Any unusual abdominal pain or continuous nausea and vomiting

Call 911 or take your loved one to the emergency room if you notice rapid or dramatic changes in stoma color, or if your loved one is experiencing symptoms of severe cellulitis, such as high fever, chills, vomiting, and areas of skin that are red, hard and swollen, hot or painful.

Avoiding Caregiver Burnout

Self-care is essential. Remember to refill your own energy reserves by making time for the things that replenish you: socializing with friends, walking outdoors, spending time on your hobbies, etc. Look after your own health by eating well, exercising and getting enough sleep.

A key part of being an ostomy caregiver is building your support network. If you try to do everything on your own, burnout is certain.

For support with ostomy troubleshooting and medical concerns, reach out to your loved one’s WOC nurse.
For support with finding the right ostomy products, contact your WOC nurse, your product manufacturer helpline, or SimplyMedical customer service.
For hands-on support, consider hiring a home health care aide for respite care.
For emotional support, join an ostomy support group, in person or online. The United Ostomy Associations of America has a searchable database of support groups.