Updated onJun. 09, 2022

Comprehensive Guide To Ostomy

While there are not agreed-upon numbers, it is estimated that 725,000 to one million individuals are living with an ostomy in North America—a surgery that creates an opening in the body to expel waste. The average age of ostomates has been cited at 68.3. Ostomies are commonly performed to treat rectal, colon, cervical, and bladder cancers, as well as other cancers of the pelvic regions. It has also been used for issues related to inflammatory bowel disease, congenital issues like spina bifida and Hirschprung’s, as well as genetic disorders and accident-related perforations.

The most common types of ostomies include the ileostomy (created from the ileum, part of the small intestine); ascending colostomy (from the ascending colon); descending colostomy (from the descending colon); sigmoid colostomy (made from the last part of the colon), loop ostomy (which can be from any part of the small intestine or colon), or urostomy (which diverts urine from the bladder, usually via an ileal or cecal conduit).

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Anatomy of the Intestines

Following surgery, a patient cares for his or her stoma—the part of the intestine brought out of an abdomen. The ostomy is the actual opening created during the operation. An appliance called a pouch, also known as a flange, contains waste and protects the skin.

ostomy supplies

Fortunately, medical advances are making it easier than ever for patients undergoing ostomies to resume normal lives after treatment. Even as an ostomate ages, careful planning and consulting ostomy resources can ensure stable quality of life.

Getting used to an ostomy can take some time. But individuals with ostomies can do most of what they enjoyed before their surgery—including work, swim, travel, play sports, be sexually active, and wear almost any type of clothing they like. An important consideration for a permanent ostomy is watching for body and brain changes as time goes on so that a stoma may be properly cared for.

Lifestyle

How You Can Live Better With An Ostomy

While there may be a few changes to your regular diet, you should be able to enjoy most of the foods you did before your surgery. The key will be easing into your favorites and taking note of any kind of reactions to what you eat. The main caveat will be the importance of chewing your food thoroughly, and drinking plenty of fluids.

You can pretty much wear what you wore before your surgery, though some people tend to wear tighter clothing to counteract the pouch. Your first instinct will be that everyone can see or tell that you have a ostomy bag, but that’s generally heightened awareness over reality. Most pouching systems are designed to go undetected, regardless of your clothing style. Depending on its location you may find waistbands or belts a bit uncomfortable.

Outside of your close circle of family and friends (i.e. those who you choose), is it really anybody’s else’s business? It is absolutely your choice as to whom you share this information with, and how much you share. Sharing your experience however, can be very powerful and can go a long way to educating people as to what ostomy is really all about, not to mention clearing up a lot of misunderstanding.

Travel is still an option for you; depending on how and where you travel it may just require a bit more planning. Plan to take extra the amount of supplies you need; checked luggage can get lost or delayed and plans themselves can encounter unexpected delays. If traveling by car, keep your supplies either in a cooler or the coolest part of the car.

The UOAA website offers a Travel Communication Card you can download, and they recommend the card, along with a note from your doctor, be used when going through customs or any luggage inspection. They also recommend you pack your supplies in at least two places (carry on and checked luggage), and consider enrolling in TSA Pre-Ceck. Regardless, do expect a pat-down. Most importantly, be transparent and communicate from the start.

Medicare Part B covers your ostomy equipment, but only a predetermined maximum amount each month, so be aware of that if you plan on traveling. Most individual health insurance will generally pay a high portion of what they cite “reasonable and customary” costs after your deductible is met.

Lifestyle Tips After An Ostomy

Once you recover from your surgery you can return to your regular activities without much concern. Just be certain to communicate with your healthcare team as to your daily routines.

Even if you had your ostomy years ago and have handled your stoma just fine since then, you can benefit from new resources as you grow older. Aging, illness, and disability may affect the practical logistics of using your stoma. You may encounter problems in older years due to physical and/or cognitive impairment. Learning the right management strategies and tapping into local and national resources available can help you effectively manage your stoma for years to come.

Know The Best Practices Of Stoma Care

Whatever your age, and whether your ostomy took place recently or long go, simple is best when it comes to caring for your stoma. Clean the site with plain water, dry by blotting with a towel or by air-drying, and then place the appliance without adding any lotions or powders.

Know Your Stoma Nurse

Anyone with an ostomy should see a stoma nurse every year. Have a contact number for this professional in your local hospital and city. Check to see if your area also has specific stoma care clinics. The United Ostomy Associations of America offers an online support group finder for your region.

nurse at home

A stoma nurse isn’t limited to helping with postoperative care. He or she is there for you whenever you have questions or issues. Ostomy patients aren’t usually discharged from these nurses’ care, though some do lose touch with their nurse contact as they move on with their lives and become accustomed to caring for their stoma independently. It may not be easy to find the nurse again if problems occur years later, which is why it’s better to touch base frequently and sooner than later.

Visiting a stoma clinic periodically can go a long way in preventing problems. Newer, more user-friendly stoma appliances are continually being developed. This is a chance to learn about new advances in stoma care and check to make sure that what you’re currently using is working for you.

Monitor Changes In Your Body

After living with your stoma for some time, it’s generally easy to recognize its normal appearance and function. Over the years, however, you may miss subtle changes in your skin like wrinkling, soreness, and drying from stoma leakage. This can occur if the stoma appliance does not fit well around the stoma or doesn’t adhere securely to the skin, and you may not notice this new development for a long while. Your stoma nurse can teach you how to appropriately place your appliance onto sagging skin. Standing or sitting upright will stretch the abdominal skin and take care of creases. Watching with a mirror, you can then stretch the skin to completely even out the surface.

Stomas do change in size and shape throughout life and with weight fluctuation. They can become stretched if you put on weight or will also require a change if you experience weight loss. Periodically measure your stoma to watch for changes. Your stoma nurse or stoma clinic may also recommend stoma paste and rings that can protect the skin.

A number of physiological and degenerative changes may prove problematic in older years. Arthritis, memory loss, visual impairment, and new health issues like stroke or Parkinson’s disease can also change a stoma’s shape and size. Less active sebaceous glands and a decreased immune response also call for adjustments. Hernia and prolapse also create their own issues. Your stoma nurse can guide you through these changes. Product delivery services can pre-cut flanges, which is helpful for anyone who cannot easily use scissors.

Make Use Of All Resources

Along with local nurses and clinics for stoma care, stay aware of local, national, and even international ostomy contacts if you travel abroad. A UOAA Travel Communication Card will help you with TSA screening and customs logistics. The United Ostomy Associations of Americais a go-to source of ostomy information, as is the International Ostomy Association (IOA). The Chrohn’s and Colitis Foundation of America, and American Cancer Society, as well as nonprofits related to specific medical conditions, can help you with information and support resources along the way.

Starting now and in years to come, your attitude effects how you live with your ostomy. Think of it as a different way to do something you have done all your live: eliminate waste. There’s no reason you can’t live a normal, fulfilling life after an ostomy procedure. Properly caring for your stoma as you age—and making proper adjustments—can prevent infections and maintain your dignity and comfort.