You or a loved one has just had surgery resulting in an ostomy or are contemplating one. Perhaps you are feeling a little confused and frightened, and are wondering how you will ever be able to manage. An ostomy can be a lifesaving procedure for patients with cancer, ruptured diverticulitis, or any number of intestinal or bladder diseases. It often improves life for patients with inflammatory bowel diseases such as Crohn's disease or ulcerative colitis.
Ultimately it enables patients to continue to enjoy a normal, full range of activities, including travel, sports, family life and work. An ostomy is no reason for opting out of life, and patients can live a full and active life despite the presence of an ostomy pouch. Life will go on as before!
Below, you will find helpful information regarding ostomy care. Upstate University Hospital has Certified Wound, Ostomy, and Continence Nurses (CWOCN's) who are Nurse Practitioners and are specially trained to assist all ostomy patients. New ostomy patients will work closely with the ostomy nurse while hospitalized. This nurse will teach you how to care for your ostomy, make sure you have supplies that you need, write prescriptions for needed supplies, and follow-up with you after discharge.
Please call the Wound/Ostomy Department directly if you have any questions at 315 464-6291.
Disease of or damage to the gastrointenstinal tract that requires surgical treatment can result in the body no longer being able to expel food waste through normal bowel movements. Under these circumstances an alternate path for bowel movements must be created so that food waste can be safely removed from the body. An ostomy provides that alternate path.
As such, an ostomy is a surgically created opening on the front of the abdomen where a portion of the bowel is brought through to create a stoma or opening. Through the stoma, waste is allowed to pass directly out of the body and into an attached ostomy pouch.
More information on the two types of ostomy that are associated with colorectal treatment is listed below.
Living With Your Ostomy
Helpful details on how you can cope with your ostomy and live a normal life:
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) offers advocacy support and advice.
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.
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.
When you leave the hospital you should have prescriptions for supplies as suggested by your ostomy nurse, unless you were told that supplies would be decided on at a later outpatient visit. As your stoma settles into a more permanent shape after the first four to six weeks after surgery, you may need to use different ostomy supplies.
Ostomy supplies are paid for under Medicare Part B and Medicaid. Most private insurance policies pay for them. You need to call your insurance company to find out about your coverage. Inform them that you are a new ostomy patient, and ask them if they have a "preferred provider" for ostomy supplies. Reimbursement at different vendors will often vary.
If your insurance does not require you to go to a particular vendor, contact your local pharmacy where you normally buy prescriptions, if that is your preference. Pharmacies can usually order most of the supplies you need if you have a prescription, or you may want to go to a local durable medical equipment provider.
If you don't have any insurance coverage for your ostomy supplies then the following options may help:
- You may qualify for free supplies from one of the ostomy manufacturers (Convatec or Hollister). Contact your ostomy nurse for an application. Usually this application has to be filled out every three months.
- Shop around! Make telephone calls and explain that you have no insurance coverage, and ask for a discount if possible.
- OstoGroup is a nonprofit organization that provides FREE ostomy supplies to the uninsured for the cost of shipping and handling, or they can help you find products at a substantial discount.
- Sometimes your ostomy nurse may have extra supplies on hand to tide you over until a permanent source can be found.
Ostomy Support and Resources
The most important ostomy support you can receive is that of your family and close friends. Don't be afraid to talk with them about your concerns. Be sure also to talk to your healthcare team (doctor and nurses), especially your ostomy nurse. Call at any time if you are experiencing ostomy problems. Before discharge from the hospital, talk with your doctor and ostomy nurse about the need for a home care nurse.
- Schedule a follow-up visit with your ostomy nurse at the same time as your first post-operative visit with your physician.
- It is recommended that you are seen every 6-8 weeks for the first 6 months after discharge, then yearly to have your stoma re-measured, to keep current with supplies, and be observed for any developing bad habits.
- Check with your insurance company before your visit to confirm coverage for ostomy outpatient care and to receive proper authorization.
Local Support Groups
Crouse Hospital Ostomy Support Group: Meets at 6:30 pm on the second Tuesday of every month. For more information call (315) 470-7300. There is also a newsletter that is mailed out every other month; call to be added to the mailing list.
J-pouch Support Group at St. Joseph's Hospital: Meets every 3 months. For more information call (315) 448-5853.
Support Groups and Websites
- The United Ostomy Associations of America (UOAA)
- Crohn's and Colitis Foundation (CCFA)
- National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK)
- American Cancer Society
- Information about Convatec ostomy products, with lots of consumer education
- Information about Hollister ostomy products
- An online resource for people with ostomies
- Information about ileoanal anastamosis (J-pouch), including a chat group
- United Ostomy Associations of America Magazine
- Bladder Cancer Advocacy Network (BCAN)
- International Ostomy Association (IOA)
- Canada United Ostomy Association
- For ostomates without insurance in the U.S.
- For gay and lesbian ostomates
- Colorectal cancer education and support
- An association of ostomy nurses
Child Ostomy online resources: