People who have advanced gastrointestinal stromal tumors (GIST) can sometimes also have ostomy surgery. That’s an operation that reroutes your body’s waste into a bag that attaches to the outside of your abdomen. In other words, you’ll poop in a bag attached to an opening on the skin of your belly area, either temporarily or permanently. You’ll also have to learn new ways to care for your body, new eating routines, and new adjustments to activities such as exercise and sex.
When you have a GIST ostomy surgery, your surgeon creates a new opening in your body called a stoma. Your bowel movements pass from your digestive system (your large or small intestine) through the stoma into a small, thin bag (also called a pouch) that connects to the outside of your body. You will need to empty the bag into a toilet several times a day.
Having to do this may feel weird, upsetting and isolating – but keep in mind this kind of surgery isn’t rare. About one in 500 Americans live with an ostomy, either due to GIST ostomy surgery or other causes. But everyone who has an ostomy must learn daily care habits and changes that help prevent skin irritations, infections, leaks, and other issues.
Caring for Your Stoma Pouch System
Your health care team may suggest a stoma pouch system that’s best for your body and its needs. There are several options. Most come in either one or two parts.
With a two-part pouch system, you’ll have a bag (or pouch) plus a skin barrier that protects your stoma and the skin surrounding it. The skin barrier is sometimes called a wafer or baseplate. With two-part systems, you attach and remove your pouch from the skin barrier (kind of like snapping on a lid for a food storage container).
With one-part systems, the pouch and barrier stay connected.
To care for your system, you should:
- Empty your pouch before it gets full – usually when it’s a third or half-filled. A full bag is harder to empty without spills.
- Change your pouch system, including your skin barrier, about every 3 to 5 days. If it leaks, change it right away, as leaks can irritate your skin. (Leaks that keep happening need to be quickly reported to your health provider.)
- Consider emptying your pouch before bedtime so it doesn’t fill with gas overnight.
Today’s stoma pouches are designed to be odor-free. Many have carbon filters to prevent smells from seeping out. But if you notice odors, you can put deodorizing products in your pouch, such as drops or charcoal tablets, or you can take oral deodorants to make your waste smell better. Check with your doctor before trying any of these remedies.
Caring for the Skin Around Your Stoma
When you empty your pouch, check your skin around your stoma to see if it looks red, irritated, or wet. It’s important to catch any possible infection early, before it gets worse. Connect with your health team as soon as you notice problems, rather than waiting and hoping they will improve on their own.
Sometimes, products used in your pouch system – such as adhesives, the skin barrier, or the pouch itself – can bother your skin. It can happen even if you’ve used them successfully for a long time. Your doctor can prescribe medication to help.
It’s important to keep the skin around your stoma clean. Wash with water and mild soap, avoiding alcohol, oils, or fragrances. Alcohol can dry skin out; perfumes can aggravate allergies; and oil-based soap could lead to slippery skin, making it hard for your pouch to attach.
If you’re hairy around your stoma, consider carefully shaving or using other hair removal methods, such as laser removal. This is needed since hair can get in the way of ostomy attachment. (But check with your ostomy nurse for instructions.)
You can shower with your stoma pouch on or off, though if you have had a type of ostomy called an ileostomy, you may need to keep your pouch on. (Your doctor can advise you.) If you take a bath, you should keep your pouch on.
Learning What to Eat – and Not Eat
You may have heard that having an ostomy means you have to forever restrict your food. This isn’t true for most people. Once you’ve recovered from surgery, you likely can return to your normal diet – or close to it.
But you may need to limit or avoid certain foods and beverages, depending how your body responds to your ostomy. This is especially true during the first 6 months after your ostomy, when your body is adjusting to its new reality.
You may need to add different foods slowly at first, to keep an eye on your body’s reaction.
One concern is gas, because gassy foods can make your pouch inflate. If this is a problem, try avoiding foods known to cause gas, such as:
- Cruciferous vegetables like cabbage, kale, broccoli, and cauliflower
- Beans
- Onions
- Spicy food
- Chewing gum
Some foods can be harder to digest than others and could block the opening to your stoma. Take care – and possibly limit – eating these:
- Popcorn
- Corn
- Nuts
- Seeds
- Dried fruit
- Mushrooms
Another concern is hydration. Drink plenty of fluids to stay hydrated, and avoid or limit dehydrating substances, such as:
- Caffeine (though tea and coffee are considered OK)
- Alcohol (Moderate use is OK.)
- Foods high in simple sugars
Your health care provider can give you more individualized advice about what you should eat or drink.
Modifying What You Wear
You may be afraid that if you wear tight clothes, people will be able to see your pouch and KNOW. But usually, this isn’t the case. If needed, you can hide your pouch with special wraps and underwear.
Some people find that they can also use colors and patterns to help with masking stomas. If you have a stoma above your belt line, wear a patterned shirt; if below, wear patterned (or dark) pants. Men also may switch from tight belts to suspenders, which can help hide pouches.
Returning to Activities, Including Intimacy
Exercise and sports activities
Another common fear is that having an ostomy will limit your ability to be physically active. Yet plenty of athletes in various sports have played while living with ostomies, including San Diego Chargers placekicker Rolf Benirschke and pro golfer Al Geigberger.
You should be able to take part in most sports and exercises. Your doctor may advise you to be careful with contact sports or doing activities that involve heavy lifting. Also, sweating could affect how your pouch sticks to your skin, so if you’re working up a sweat while working out, consider buying a special workout pouch.
Swimming is another activity you can safely enjoy, since pouching systems are waterproof and can be concealed under swimsuits. If you know the time and frequency of your bowel movements, you may be able to use a smaller pouch or “stoma cap,” which holds 1 to 2 ounces of waste material, while in the water.
Travel
A myth exists that if you have a stoma, you can’t fly, because the cabin pressure could cause your pouch to fail. This is not true. You can travel in planes, trains, automobiles, or any other way. Also: Seatbelts don’t hurt your stoma.
What does change with a stoma is the amount of stuff you’ll need to bring with you. Forget traveling light. You’ll need to pack plenty of stoma supplies, including a carry-on containing everything you’ll need to last you during a trip and any possible delays, lost luggage, or other problems.
Sex
No, your sex life isn’t over because of your ostomy – though it’s natural to have this fear. Experts say sex with a stoma is safe once your surgical cut has healed (usually about 2 months after your procedure) – unless you place unusually strong pressure directly on the site.
You may want to use wraps that circle around your waist or abdomen to hide and protect your stoma. These are available for both men and women.
Another strategy people use is to empty their ostomy bag first. Some people even irrigate their stoma, essentially giving themselves an enema beforehand. (But check with your doctor before trying this; it’s not recommended for people with some types of ostomies or conditions.)
You also may find it helpful to communicate honestly with your partner about your feelings and concerns.
Some medical facilities have sexuality and relationship counseling available for cancer patients and survivors who are uncomfortable about the changes in their bodies. If intimacy remains difficult, you may want to seek counseling.
Dealing With Depression or Other Emotional Issues
Let’s face it – having an ostomy is a big change in both your body and your daily life. It’s natural to fear what may be ahead. And it’s not surprising to have symptoms of depression, especially if your ostomy is permanent.
If you are struggling with your body image and feeling negatively about your ostomy, experts suggest some steps you can take:
- Don’t avert your eyes when you are dealing with your stoma. Instead, look at it, which can help you accept and feel better about this new part of your body.
- Focus on why you had your surgery – to help treat your GIST, potentially saving or extending your life.
- Talk with other people who’ve had ostomies.
Support groups (both online and in person) can help you connect with people who have gone through what you’re going through. You may find many examples of people living active, happy, and fulfilling lives, once they adjusted to living with their ostomies. This can help you find a positive path forward.
