Living With an Ostomy: FAQs
You are not alone–embrace life!
People of all ages have life-saving ostomy surgery for a wide variety of reasons and most go on to live active and healthy lives. You have very likely already met someone with an ostomy but never knew it. UOAA can help you find the answers you need as you begin your “new normal” life and can connect you to resources to help ease the physical and emotional changes ahead. After recovery and finding the right pouching system to fit your body, you should expect to resume an active life in work, play, and with family and friends.
Remember your ostomy can bring order out of a disorder that could have disrupted or ended your life.
As always, in order to obtain answers to your individually specific questions, be sure to consult with your doctor or ostomy nurse for help.
You should first tell those who need to know, such as healthcare providers, your spouse or partner, and people who are involved in your recuperative care.
Don’t feel that you have to explain your surgery to everyone who asks. It is your choice who you choose to share with and how much information you are comfortable sharing. Some people are just curious and explaining that you had an abdominal surgery is more than adequate. Sharing your story can be powerful however and help educate the larger community and your circle of friends that people with an ostomy are all around us living healthy lives.
If you are beginning an intimate relationship, thorough discussions with your future partner about life with an ostomy and its effect on sex, children, and family acceptance will help alleviate misconceptions. If you have children, answer their questions simply and truthfully. Depending on their age, a simple explanation may be enough for them.
You may want to confide in your employer or a good friend at work. An ostomy is nothing to be embarrassed by and keeping it a complete secret could cause practical difficulties.
As your strength returns, you can go back to your regular activities. Most people can return to their previous line of work; however, communicate with your healthcare team about your daily routines, so they can assist you in returning to maximum health as early as possible.
People living with an ostomy, bike, swim, ski, jog, play team sports, do yard work, play with their kids, and climb mountains. You name it, people with an ostomy can do it.
A stoma guard may be a good idea for some contact sports. Check with a medical professional about abdominal strengthening as there is an increased risk of a hernia from some activity and search out information from other athletes with ostomies.
You may bathe with or without your pouching system in place. If you wish to take a shower or bath with your pouch off, you can do so. Normal exposure to air or water will not harm the stoma, and water does not enter the opening. Choose a time for bathing when the bowel is less active. You can also leave your pouch on while bathing or cover it with plastic to stay dry.
There may be some modifications in your diet according to the type of ostomy surgery. People with colostomy and ileostomy surgery should return to their normal diet after a period of adjustment. Introduce foods back into your diet a little at a time and monitor the effect of each food on the ostomy function. Chew your food well and drink plenty of fluids. Some less digestible or high roughage foods are more likely to create the potential for blockage problems (i.e., corn, coconut, mushrooms, nuts, raw fruits, and vegetables).
There are no eating restrictions as a result of urostomy surgery. Urostomates should drink plenty of liquids each day following the healthcare team’s recommendations.
Whatever you wore before surgery, you can wear afterward with very few exceptions. Many pouching systems are made today that are unnoticeable even when wearing the most stylish, form-fitting clothing for men and women.
Depending on your stoma location you might find belts or some waistbands uncomfortable or restrictive. An option is to wear clothing with higher or looser waistbands.
Women may enjoy the added support and security of cotton knits or stretchy underpants or pantyhose. Men may find that jockey shorts help support the pouch. Women may want to choose a swimsuit that has a lining to provide a smoother profile. Stretch panties (with lycra) can be also be worn under a swimsuit to add support and smooth out any bulges. Men may prefer to wear a tank shirt and trunks if the stoma is above the belt line.
Some companies offer customized underwear and intimate garments designed specifically for the ostomate. Other clothing options with sports knits will help provide support and slimming when worn over the pouch.
Sexual relationships and intimacy are important and fulfilling aspects of your life that should continue after ostomy surgery. Your attitude is a key factor in re-establishing sexual expression and intimacy. A period of adjustment after surgery is to be expected. Sexual function in women is usually not impaired. Some men who have a urostomy may experience changes in sexual function. Discuss any problems with your physician and/or ostomy nurse.
For women seeking to become pregnant their ability to conceive does not change and pregnancy and delivery should be normal after ostomy surgery. However, if you are thinking about becoming pregnant, you should first check with your doctor about any other health problems.
All methods of travel are open to you. Many people with ostomies travel extensively, from camping trips to cruises to airplane excursions around the world. Take along enough supplies to last the entire trip plus some extra, double what you think you may need. Checked luggage sometimes gets lost, carry an extra pouching system and other supplies on the plane with you. When traveling by car, keep your supplies in the coolest part, and avoid the trunk or back window ledge. Seat belts will not harm the stoma when adjusted comfortably.
When traveling abroad, take adequate amount of supplies, referral lists for physicians and medical centers, and some medication to control any diarrhea and stop the fluid and electrolyte loss. When going through customs or luggage inspection, use the UOAA Travel Communication Card, and a note from your doctor stating that you need to carry ostomy supplies and medications by hand may also be helpful.
For more information, see our Ostomy Travel Tips page.
Absorption may vary with individuals and types of medication. Certain drug problems may arise depending on the type of ostomy you have and the medications you are taking. Make sure all your healthcare providers know the type of ostomy you have and the location of the stoma. This information will help your pharmacist and other healthcare providers monitor your situation (i.e., time-released and enteric coated medications may pass through the system of ileostomates too quickly to be effective).
The type of pouching system that was used in the hospital may need to be changed as the healing process takes place. Your stoma may shrink and will require decreasing the opening size of your pouch to match your stoma. Your unique lifestyle or peristomal skin sensitivities may prompt you to try another pouching system after a recuperative period. Today there are a wide variety of pouches that you can choose from and it is advisable to know your options. Make an appointment with your ostomy nurse to evaluate your management system.
Check the pouch occasionally to see if it needs emptying before it gets too full and causes a leakage problem. Always empty prior to going out of the house and away from a convenient toilet. Most people find the easiest way to empty the pouch is to sit on the toilet with the pouch between the legs. Hold the bottom of the pouch up and remove the clamp. Slowly unroll the tail of the pouch into the toilet. Clean the outside and inside of the pouch tail with toilet paper. Replace the clamp.
The adhesiveness and durability of pouching systems vary. Anywhere from three to seven day is to be expected. Itching or burning are signs that the wafer should be changed. Changing too frequently or wearing one too long may be damaging to the skin.
Take your ostomy supplies with you since the hospital may not have your brand in supply. If you are in doubt about any procedure, ask to talk to your doctor.
Ask to have the following information listed on your chart: 1) type of ostomy or continent diversion, 2) whether or not your rectum is intact, 3) describe in detail your management routine and list the ostomy products used. For urinary stomas, 4) do not take a urine specimen from the urostomy pouch, use a catheter inserted into the stoma.
Supplies may be ordered by calling a distributor or requesting a supplier’s mail-order catalog online. Note: Most manufacturers of products do not directly fill supply orders but many have customer services designed to help you find the best products for your unique needs, and may offer sample products. (For more information, see the Ostomy Product & Supply Information page on this site.)
Medicare Part B covers ostomy equipment. Medicare only allows a predetermined maximum quantity each month. Medicaid is the federal/state insurance of last resort for low-income persons. Check with the state Medicaid office for specifics.
Individual Health Insurance: most plans typically will pay a high percentage of the “reasonable and customary” costs after the deductible is met.
You should call the doctor or ostomy nurse when you experience anything out the ordinary or have:
1. severe cramps lasting more than two or three hours
2. a deep cut in the stoma
3. excessive bleeding from the stoma opening (or a moderate amount in the pouch at several emptyings)
4. continuous bleeding at the junction between the stoma and skin
5. severe skin irritation or deep ulcers
6. unusual change in stoma size and appearance
7. severe watery discharge lasting more than five or six hours
8. continuous nausea and vomiting; or
9. the ostomy does not have any output for four to six hours and is accompanied by cramping and nausea
For medical assistance, seek help from your physician, surgeon, or ostomy nurse. Contact UOAA for educational information and referrals to local support groups.
Contact the Wound, Ostomy and Continence Nurses WOCN Society national office, 1-888-224-9626 for information and local referrals for ostomy nurse specialists.
United Ostomy Associations of America
P.O. Box 525
Kennebunk, ME 04043-0525
Call us toll-free at: 1-800-826-0826.
Our Information Line hours are Monday-Friday, 9AM to 3PM (Wednesday until 2PM) EST. If you have an emergency, please dial 911 or contact your local medical professional.
UOAA does not provide Medical, Mental Health, Insurance or Legal Advice.
Join our national advocacy network and take action on issues that affect the quality of life of all people living with an ostomy or continent diversion in the United States. Help UOAA make an impact on decision-makers and together we can drive change.