More than 750,000 Americans live with an ostomy, a life-saving surgical procedure that allows body waste to pass through an opening in the abdomen (stoma) and into an ostomy pouch. It may be necessary when treating Crohn’s disease, colon or bladder cancer, ulcerative colitis, and severe injury to the bowel or urinary tract.
Though common, having a stoma can still result in feelings of overwhelming physical and emotional change. It’s worth remembering that there are still many successful, even famous, people out there living with an ostomy.
Not all ostomies are the same, but they all share common misconceptions. Here are some of the most prevailing myths when it comes to living with one.
1. Everyone Knows That I Have an Ostomy
Wondering if your ostomy bag is noticeable is understandably a big concern. In reality, people will know about it if you decide to tell them. In most situations, revealing you have a stoma is your personal choice.
Ostomy pouches are designed to be discreet and easily hidden under most clothing. They come in a wide variety of types and sizes so you can be sure to find one that fits into your lifestyle.
With hundreds of thousands of Americans living with ostomies, it’s extremely likely that you’ve already met someone with a stoma without even knowing it.
2. All Ostomy Procedures Are Permanent
Stomas are not necessarily a permanent solution. For some conditions (such as inflammatory bowel disease) an ostomy is often temporary, and some were created to allow the small intestine time to heal after surgery. Temporary ostomies can be surgically removed at a later stage, and permanent ostomies are typically performed only when parts of the large intestine (as well as colon, rectum, or anus) have to be removed.
Whether your ostomy is permanent or not, connecting with others can be a great help in working through these new changes and gaining more confidence. You can find a local support group online via blogs, Facebook groups, as well as the United Ostomy Associations of America.
3. Ostomy Bags Smell Bad
While this might have been true in the past, modern advances in technology mean that there’s no reason your pouch should smell. You may notice odor when changing/emptying your ostomy bag, but this is no different to anyone else using the toilet.
If you are still worried, ostomy odor control products are available in both solid and liquid forms. Depending on your preference, you can purchase a product that is either taken orally or placed directly into your ostomy bag.
Furthermore, for at-home use, you can choose a room odor eliminator that neutralizes any unpleasant smells.
4. I’ll Be on a Special Diet for the Rest of My Life
While there might be some small adjustments you need to make, once your stoma has healed, you can generally enjoy the same food you used to. There is not specific diet, but balanced, healthy eating is recommended.
During the healing process, ostomates (especially those with an ileostomy) may be advised to avoid foods that contain cellulose, such as nuts, dried fruit, and raw fruits and vegetables.
For the first few weeks following your surgery, prepare simple, easy-to-digest food. Eating at the same time each day will also help you regulate bowel movements.
5. Flying and Traveling with a Stoma Is Stressful
Having a stoma is no reason to stop you from traveling anywhere in the world! You may fear long journeys (due to concerns such as not being able to find a clean place to empty your pouch) or not having the necessary ostomy supplies. The best way to overcome these concerns is to plan ahead and anticipate all possible challenges.
The key to any worry-free travel is to be well-prepared, so always pack more ostomy supplies than you think you will need. This will come in handy just in case you don’t have easy access to supplies at your destination or you experience stomach problems during your stay.
Air Travel With an Ostomy
A common concern about flying with a stoma is that the pouch will expand or burst during the flight. You ostomy bag will not burst, although you may notice some bubbles in it. This is usually caused by something you ate or drank prior to the flight. Try to avoid foods that cause gas (as well as fizzy drinks) before and during the flight.
In the event that your stoma bag does expand, simply go to the bathroom and change/ empty the bag.
In the event your checked luggage is lost or delayed, carry enough ostomy supplies in your carry-on to last you a few days. You don’t need to carry a huge bag of supplies, but there are some essentials that you might want to bring along on board, including at least two differently-sized bags, skin preps (e.g. adhesive wipes, skin barrier wipes, skin cleanser), and extra underwear.
If you are concerned about airport screenings and pat-downs, consider getting a UOAA travel communication card, This will help you discreetly notify the agents about your ostomy.
6. Sex and Physical Intimacy Are Impossible with an Ostomy
It’s normal to be feel insecure or nervous about how a stoma will change your intimate encounters, you can still have a fulfilling love life.
For most ostomates, intimacy problems are mainly psychological, which is why trust and open communication are so important. Don’t be afraid to share your feeling with your partner. This will relieve a lot of anxiety and stress you both may have about being intimate post-surgery. If you are with a new partner, take the time to tell them about your ostomy before being intimate.
If you are not yet comfortable with your ostomy, simply cover it with a support belt or special ostomy underwear. If you’re worried about stoma pain during sex, remember that stomas don’t have any nerve endings (but allow it a few weeks to heal before commencing with sexual activity).
7. I'll Never Be Able to Swim Again
There is no reason why having an ostomy bag should prevent you from exercising and participating in sports activities. In fact, being physically active not only helps you stay fit, but also reduces the risk of a hernia.
Swimming can seem scary for new ostomates. With a good quality ostomy bag, however, you can still enjoy swimming without worrying about leaking or loosening.
If you’re still getting used to your pouch (or are feeling a bit self-conscious), opt for a smaller bag, pouch cover, or an ostomy support belt. Choosing a bathing suit or shorts with dark colors or patterns should help you easily conceal the stoma bag.
If there is some predictability to your stoma function, you can use a stoma cap. Because they’re small and discreet, stoma caps are often ideal temporary solution for physical activities.
8. Stomas Are a Hassle to Clean
Maintaining good hygiene is a vital part of ostomy care. Cleaning your stoma might seem difficult, but you only need warm water and a washcloth most of the time. If needed, you may use an adhesive remover to clean any residue from the skin.
Once the skin is clean, and before applying your ostomy appliances, you can use skin prep products to prepare the skin to better accept adhesion. Skin preps are easy to apply and will help protect the delicate skin around your stoma.
Products such as ostomy paste and powder are specifically designed to eliminate any discharge around the stoma. They prevent irritation while providing a strong and secure hold between the skin and ostomy bag.
Put Your Fears Aside
A stoma does not limit your life or career options, and most ostomates are perfectly able to return to normal life once they are healed form the surgery.
Unless you have other health issues, a stoma shouldn’t prevent you from going back to work, exercising, traveling, being a parent, and enjoying life.
Find out more ostomy tips, as well as ostomy product reviews in our blog!