Living With Your Ostomy

An ostomy is nothing to be embarrassed about and is no reason for withdrawing from life. People with ostomies have lived many years with active lives. You can live and love life, and travel, dance, golf, swim, join clubs, go to church, continue relationships and intimacy, and enjoy family, children, and grandchildren. Your privacy is important and only you need to decide whom to tell that you have an ostomy.

The following describe in more detail how you can cope with your ostomy and live a normal life. Click on a each to see the detailed information.

Be Prepared

Always be prepared for the possibility that you may need to change your ostomy system at any time. Keep a small travel kit with you at all times stocked with a pouch, wafer and all other supplies you may require.

Food and Drink

In general, there are no dietary restrictions for people with ostomies, as long as you chew your food well. Through the process of trial and error, you will learn which foods may produce gas and odor and which foods to avoid or decrease. It's not a bad idea to take a daily multivitamin with minerals to avoid possible vitamin and mineral deficiencies. To stay properly hydrated you should drink at least eight to ten glasses of water or other fluids each day, unless you have been advised by your doctor to restrict fluids.

Returning to Work

As your strength returns you will be able to go back to your regular activities, including work, after the appropriate surgical healing time prescribed by your physician. While at work you may choose to confide in your employer or co-workers that you have an ostomy. A letter from your doctor to your employer may be helpful should the employer have doubts about your physical capabilities. If your job involves heavy lifting, check with your doctor about lifting restrictions; however, many persons who have ostomies can and do hold jobs that involve lifting, such as firemen, mechanics, truck drivers, and athletes.

If you encounter employability or insurance issues, the United Ostomy Associations of America (UOAA) External Icon offers advocacy support and advice.

Travel

People with ostomies have traveled the globe. Have a well-packed travel kit and when flying be sure to store it in your carry-on luggage. Take at least twice the supplies that you normally use.

Bathing and Showering

You may bathe or shower with or without your ostomy system on your abdomen. If bathing with it on, just pat the skin dry when done. When it is time for a change, you may want to prepare the ostomy wafer in advance of the shower. It is okay to bathe or shower even without the ostomy system on as exposure to air or contact with soap and water will not hurt or enter the stoma.

Water Activities

You can still enjoy water activities such as swimming, scuba diving and sailing. The following tips may help make these types of activities less worrisome for you:

  • Before entering the water, empty your pouch making sure to empty it regularly throughout the course of the activity as needed
  • Consider "picture framing" (putting waterproof tape around all four sides of the wafer as if you were going to put it in a picture frame) to give an added level of security
  • Men with ostomies should be comfortable in regular swim trunks while women may find that tankinis work best and which also make it easier to empty the pouch; choosing a bathing suit made of a patterned material rather than one of a solid color will help camouflage the pouch

Intimacy and Sexuality

Ostomy surgery should not negatively affect a trusting, intact relationship. It is normal to feel self-conscious and sensitive about the change in your body. Communication and trust are at the heart of the healing process. It is important to share your feelings with your spouse or loved one, and to respond to their concerns as well. It is important to realize that it is possible for pelvic surgery to disrupt both the nerves and the vascular supply to the genitals. In addition, other treatments such as radiation, chemotherapy, or medications may interfere with sexual function. Do not be afraid to discuss this with your physician, and seek the advice of a specialist or sexual counselor if needed.

The following tips can help enhance your intimacy:

  • Be sure to empty the pouch first
  • Wear a smaller pouch such as a closed end pouch or stoma cap
  • If you or your partner are uneasy about seeing your pouch, cover it with specially designed underwear, lingerie, or pouch covers - there are many sites online that sell specialty underwear for ostomies
  • Women may want to use lubrication if dryness is experienced

"Phantom" Rectal Sensation

Sometimes people with ostomies feel as if they have to have a bowel movement out of their rectum, or they feel fullness in that area. If you still have your rectum and anus, this could be an accumulation of mucus within the rectum; you may even pass some mucus. The feeling of fullness and mucus drainage should eventually subside; you can wear a sanitary napkin to catch any mucus drainage in the meantime. Sometimes just sitting on the toilet as if to have a bowel movement helps.