Gastrointestinal (GI) and urological surgeries have become very advanced and precise in recent years, but some patients may still need a temporary or permanent ostomy to help their bodies remove waste – and that outcome does not mean patients cannot live full and healthy lives.
An ostomy is a surgically created opening to reroute the way you empty your bowel or bladder. This may be due to having either part or all of your colon removed or after your bladder is removed. Common causes include a serious injury, a birth defect, cancer, and inflammatory bowel diseases (IBDs), such as Crohn’s disease or ulcerative colitis (UC).
With an ostomy, stool or urine exits the body through a surgical opening in the abdomen called a stoma, which then drains into an external pouch, sometimes called an ostomy bag. The pouch is worn day and night, with emptying periodically throughout the day.
Adjusting to life with an ostomy and learning how to maintain it can feel overwhelming. However, it is important to remember two key facts: ostomies save lives, and you are not alone.
Between 750,000 and 1 million people in the U.S. are “ostomates,” including some celebrities and pro athletes:
- Sharon Osbourne, a TV personality and the wife of rock star Ozzy Osbourne, had a temporary ileostomy after colon cancer surgery in 2002.
- Bodybuilders Blake Beckford and Zoey Wright both had ileostomies for UC and continued their careers in modeling and competing.
- Radio personality and runner Adele Roberts ran the 2023 London Marathon in 3:30:22 and set a Guinness World Record for the fastest marathon finish with a colostomy.
- Golfer Al Geiberger continued to win tournaments on the Senior PGA Tour after having an ileostomy for IBD.
- Australian surfer Brittani Nicholl had an ileostomy at age 16 and continued to surf professionally.
- Former San Diego Chargers placekicker Rolf Benirschke had two ostomies due to UC and became the first pro athlete to play in the NFL with an ostomy; he played seven of his 10 seasons with a pouch.
At UT Southwestern, our wound, ostomy, and continence (WOC) nurses and certified advanced practice providers (APPs) are here for patients with temporary and permanent ostomies every step of the way. No question or concern is too trivial or silly – we’ve heard them all, and we’ll get you the answers you need.
Ostomy basics – before and after surgery
UT Southwestern has created preoperative classes that will help you start learning about your ostomy well before surgery. Led by certified ostomy nurses, the classes will help you mentally prepare, whether you are getting a colostomy, ileostomy, or urostomy. After surgery, a certified ostomy nurse will continue teaching postoperatively and ensure that you receive all the training you need to take care of your stoma and pouch at home.
At discharge, you will be provided with at least two weeks’ worth of supplies and will be assisted in establishing service with a durable medical equipment (DME) company that will ship supplies directly to your home in discreet packaging. We can also guide you to local resources and pharmacies that carry products and help you find discounts or samples through manufacturing companies.
And you won’t be on your own after you leave the hospital. About 90% of our patients take part in home health nursing support for at least a few weeks after ostomy surgery. At your two-week post-op follow-up appointment, a WOC nurse and/or APP will talk with you about your comfort level in managing the stoma and pouch and will continue to show you best practices to successfully manage your ostomy going forward.
Basic supplies most ostomates need
Some or all of these items may be needed to successfully manage your ostomy:
- Pouches come in one- or two-piece systems – two-piece systems include a skin barrier.
- Skin barriers, or wafers, stick to your skin under the stoma to prevent leakage.
- Stoma powder absorbs moisture and reduces irritation.
- Barrier wipes or spray help you clean around the stoma and protect against skin irritation.
- Barrier extenders are small pads that help customize the fit of your ostomy system and provide a wider adhesive border to help hold the skin barrier in place.
- Measuring cards will help you choose the right-sized barrier for your stoma to prevent irritation or leakage. It resembles a wedding ring sizer, with cut-out circles in multiple sizes. When you hold the card up to your skin, the edges of the cutout should not touch or rub against the perimeter of the stoma.
- Deodorizers are drops, granules, or powders that neutralize potential odors.
- Paste helps fill in uneven contours to create a flat surface and effective seal.
- Ostomy support belts help hold the pouch in place as it’s filled. They are optional but can help you feel more comfortable – especially if you are active or have a hernia or are at risk for one.
Patients who have a colostomy may also need irrigation supplies, which help flush the colon to prevent constipation. We may also recommend irrigation for patients who have a stoma in the lower part of the colon, where stools are typically more solid.
Frequently asked questions about ostomy
Is the pouch or stoma going to be noticeable to others?
When patients initially see their stoma, it can affect their feelings about body image. Depending on their condition, the ostomy likely will be no larger than 2.5 to 3.5cm wide – narrower than a women’s belt, on average.
In most cases, the pouch isn’t noticeable under clothing. In fact, most patients can wear the same dress clothes, leisurewear, and even swimsuits they wore before surgery. If not, there are quite a few options to consider, such as a body-worn wrap, specialty undergarments, and swimsuits that accommodate pouches that stick out more than usual.
Patients also worry the pouch will have an odor that is noticeable to others, which could keep them from going out with friends. Modern pouching systems are odor-proof, and products such as in-pouch deodorants and lubricants can provide added protection.
Can I have sex?
In most cases, having an ostomy does not change your physical ability to have sex, go on dates, become pregnant, or carry a healthy pregnancy. However, there are some body image and communication steps to work through.
Talking with your partner is key to finding a good balance of what works and what you’re comfortable with, which will evolve as you get used to your new routine. Your WOC nurse or certified APP can help you navigate how to bring up and discuss any concerns.
Can I eat the same foods after an ostomy?
In the first few weeks after surgery, it is best to eat a bland, low-residue (low fiber) diet. Gentle foods such as mashed potatoes without peels, strained vegetable juice, and protein shakes can help you stay nourished without upsetting your stomach. Eating smaller meals throughout the day rather than a few big meals can help regulate your bowels.
As you heal, you can start adding more flavorful, higher-fiber foods in your diet. You may wish to avoid foods that have historically made you bloated or constipated. Patients may need to eat more or less fiber depending on the type of ostomy they have. Please consult with your WOC nurse or certified APP on what specific diet you need to follow.
Will I be able to exercise or return to work?
People who have ostomies can do everything others can do – just with a little added preparation and maintenance. Playing sports like football and soccer may require a stoma guard, an external piece of hard protective gear to shield the stoma from impact.
You can still swim, shower, and use a hot tub with an ostomy pouch. However, doing abdominal strength training can increase the risk of hernia, so talk with your doctor prior to diving back into those exercises.
Most patients can return to their regular jobs after healing from surgery and getting the hang of ostomy care. Talk with your doctor and employer about accommodations you might need, such as longer breaks or increased privacy as you acclimate to your stoma.
Can I travel with my pouch?
Yes. No type of travel is off limits. Here are a few tips to make traveling easier:
- Pack extra supplies – the United Ostomy Associations of America (UOAA) suggests bringing double what you’d typically need.
- Keep ostomy products out of extreme heat or cold.
- Practice adjusting seat belts or lap restraints comfortably around your stoma.
- Carry medications to manage constipation, diarrhea, or dehydration.
If you’re flying:
- Print a UOAA Travel Communication Card that states you need to carry your gear with you and a Restroom Access Communication Card to use the restroom if needed when passengers are asked to remain seated.
- Pack ostomy gear in your carry-on and not in checked luggage, just in case your bags get lost or delayed.
- Carry pre-cut pouches for international travel (to avoid having to fly with scissors) if able.
What if I have problems with my ostomy at home?
Our WOC nurses or certified APPs can help you troubleshoot patching issues virtually or in the clinic.
Pouch leakage: This is the most common concern among patients at first. Leaks can happen if the device no longer fits properly, if a new pouch did not get a proper seal upon application, or if the stoma retracts below skin level. In this case, adjustments to your pouching system may need to be done.
Peristomal irritation: Leakage or an ill-fitting pouch can cause irritation or a wound around your stoma. Different pouch systems have different adhesiveness and durability. Most last between three and seven days. You may need to change the wafer if it is itchy or burning – wearing it too long or changing it too often can irritate the skin.
Gas: It is normal for gas and constipation to arise, especially with a colostomy. Typically, most pouches have a gas filter that can release the gas, or you can release it by opening the end of the pouch.
Infection: Stoma infection can occur if the skin is broken, especially if leakage occurs. Call your WOC nurse, APP, or doctor if you have any of the following:
- Increased pain, swelling, tenderness, warmth, or redness around the affected area of the stoma
- Discolored drainage or pus from the area
- Foul odor coming from the wound
- Fever of 101 F or higher, chills, or cold sweats
- Persistent moderate to severe pain that is not manageable with over-the-counter medications or your discharged pain regimen
- Bleeding that cannot be stopped
Dehydration: Staying hydrated is an important self-care step for ostomates. Signs of dehydration can include racing heart rate or palpitations, dry mouth, headache, decreased urine output, dark/concentrated urine, fatigue, and dizziness upon standing. Water is not enough to maintain your hydration. You need to replace electrolytes like sodium and potassium as well. Consider drinking an electrolyte replacement such as Pedialyte or another rehydration drink.
Retracted or protruding stoma: If the stoma sinks below skin level or sticks out too much, pouches can leak, causing skin irritation or an infection. Your WOC nurse can help you properly measure the stoma and adjust your ostomy products to maintain the proper fit and seal.
Where can I turn for additional support or resources?
We encourage people to join ostomy support groups, online and in person. When you surround yourself with people who have gone through similar situations, you may feel more comfortable discussing your condition with friends, family, and peers.
The North Texas Wound and Ostomy Nurses Network offers a comprehensive list of information sheets and resources for patients. Here are a few more organizations that offer support groups and resources throughout the U.S.:
- Colon Club, for patients with early age onset colorectal cancer
- VeganOstomy Community
- Quality Life Association
- Pull-thru Network
- United Ostomy Associations of America (UOAA)
We welcome patients to call in or make an appointment to talk with us about their concerns, and we can also give you a referral for mental health care, if needed. UTSW is expanding our WOC team by embedding certified nurses in our hospital and outpatient clinics to make sure ostomy guidance is never far from reach.
Receiving an ostomy is never easy, whether it is a temporary bridge to healing or a permanent lifeline. Whatever your story is, we will be by your side every step of the way with training and guidance to help you live a full, active, and healthy life.
If you need assistance with any ostomy-related issue, please call 214-645-8300 or request an appointment online.
