The questions and answers below have been reproduced with permission from patient education booklets provided by manufacturers of ostomy products. This information is not meant to provide comprehensive medical information, or to replace the information provided by your doctor, ET Nurse and other members of the health care team. Click on a question to see the answer.
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You may know someone who wears a “bag” or pouch on their abdomen or have an ostomy yourself. The term “colostomy” is often the default go-to word when people talk about ostomy care, suggesting that all “ostomies” are “colostomies” and thus created and function equally. In actual fact, the term colostomy only refers to an ostomy created from the large bowel or colon and only represents one kind of ostomy. An ileostomy is also a fecal stoma (producing stool waste) which the surgeon creates using a portion of the small bowel or ileum. Finally, a urostomyproduces urine in the absence of the bladder as with bladder cancer for example. It is important not only for health professionals to understand and distinguish between the 3 “kinds” of ostomies, but for the ostomy patient themselves as the guidelines for care are very different for each. All 3 will have a stoma or bowel that has been brought to the surface of the abdomen, but anatomically be very different.
You may know someone who wears a “bag” or pouch on their abdomen or have an ostomy yourself. The term “colostomy” is often the default go-to word when people talk about ostomy care, suggesting that all “ostomies” are “colostomies” and thus created and function equally. In actual fact, the term colostomy only refers to an ostomy created from the large bowel or colon and only represents one kind of ostomy. An ileostomy is also a fecal stoma (producing stool waste) which the surgeon creates using a portion of the small bowel or ileum. Finally, a urostomyproduces urine in the absence of the bladder as with bladder cancer for example. It is important not only for health professionals to understand and distinguish between the 3 “kinds” of ostomies, but for the ostomy patient themselves as the guidelines for care are very different for each. All 3 will have a stoma or bowel that has been brought to the surface of the abdomen, but anatomically be very different.²
It is very important for the skin around the stoma (the peristomal skin) to remain healthy and free of irritation. The peristomal skin should look just like the skin elsewhere on your abdomen. To prevent skin irritation or other skin problems, you must have a skin barrier and pouch that fits properly. Each time you remove your skin barrier and pouch, look carefully at the peristomal skin. If you notice any swelling, redness or rash, you could have irritated skin. Sometimes-but not always-irritated skin is painful. If the problem persists for more than two pouch changes, contact your ET Nurse.5
Check out an excellent reference guide provided by the WOCN (Wound Ostomy and Continence Nurses Society):
An Enterostomal Therapy (ET) Nurse is a registered nurse with advanced and specialized knowledge and clinical skills in wound, ostomy and continence care. Recognized as Nursing Specialists in wound, ostomy and continence by the Canadian Nurses Association (CNA), ET Nurses are the ONLY nursing specialty with CNA certification in wound, ostomy and continence care. ET Nurses work in acute care hospitals, outpatient clinics, community care, long term care and in independent practice. An ET nurse provides specialized holistic assessment and management as part of an interprofessional team member. He/she functions to meet the needs of individuals/families with ostomies, acute and chronic wounds and urinary and fecal continence problems.
Some nurses will have different “letters” after their name such as WOC Nurse or cWOC Nurse which indicates that they did their wound, ostomy, continence education in the United States. It should be noted that there are different education levels for wound and ostomy health professionals that vary from a 1 day course to the full scope nursing specialty an ET or WOC Nurse. To ensure your best care, be sure you are seeing a nurse with full credentials. To find an ET/WOC Nurse in your area, you can contact the Canadian Association for Enterostomal Therapy (CAET) www.caet.ca.
When to see an ET/Ostomy Nurse:
- Do you have a new ostomy and need more teaching after discharge from the hospital?
- Do you have regular leaks of your pouching system?
- Are you suddenly getting less wear-time of your pouching system?
- Have you gained or lost weight?
- Does your flange “not stick” to your skin?
- Has the shape or size of your stoma changed since surgery?
- Are you using powders and sealant sprays frequently?
- Do you have questions around nutrition, lifestyle, or intimacy?
- Do you have questions about how to better conceal your pouch with clothing or when participating in sports?
- Do you want to learn more about hernias?
- Do you think you have a hernia and want to learn about support garments?
- Do you need feedback about how you are currently managing?
- Are there sores or wounds around your stoma?
- Have you had your stoma for many years and just want to see “what’s new”?
- Is it time for an annual check up?
After ostomy surgery, digestion and absorption of medications, either alone or in combination, may be affected. It is very important to review your medications, both over -the -counter and prescription drugs, with your ET nurse or health care provider and your pharmacist. Over-the-counter treatments can include antacids, antidiarrheal, anti-inflammatory agents, aspirin, laxatives, salt substitutes, sugar substitutes and vitamins. 1
You may choose to bathe or shower with your pouch on or off. If you shower with your pouch off, choose a soap that is oil-and residue-free. These types of soaps will not interfere with the adhesion of the wafer.2
Don’t worry-you will not need a new wardrobe. Modern ostomy pouches are inconspicuous are inconspicuous under almost any kind of clothing because they’re designed to lie flat against the body. Ostomy pouches for both men and women can be worn inside or outside underwear; whatever feels most comfortable. Yet if your stoma is at or near the waistline, be sure to avoid pressure from tight-waisted pants or belts. Girdles or panty girdles can be worn, as long as they are soft and stretchy, without a front panel. For men, if you wear an athletic supporter, it is helpful to wear it one size larger.3
An ostomy should not prevent you from exercising or from being physically active. Other than extremely rough contact sports or very heavy lifting, you should be able to enjoy the same type of physical activities you enjoyed before your surgery. People who have ostomies are able to swim., water ski or snow ski, play golf, tennis, volleyball or softball, hike, sail or jog just as well after their surgery as they did before.5
As with any surgery, you will need to allow some recovery time. Recovery from this type of surgery can take from six to eight weeks. You should check with your doctor before returning to work. After your recovery, you should be able to return to work, or travel just about anywhere. Your ostomy should not limit you. Ostomy products are available through medical or surgical retailers in nearly every country in the world. Of course, it is always a good idea to take your own supplies with you when you travel – and always take more than you think you will need.5
Very few people, even those you see on a daily basis, will know that you have had ostomy surgery-unless you choose to tell them. Whether you tell others is entirely up to you. Most likely your relatives and friends already know you’ve had a health problem that required surgery. But you may feel uncomfortable about revealing more, fearing they might have negative attitudes about ostomies. It’s true that some people have uninformed ideas, but if these people are important to you, you can either help to educate them or simply not mention your surgery.1
Because ostomy surgery is a body-altering procedure, many people worry abourt sex and intimacy, and aboput acceptance by their spouse or loved one. For people who are dating, a big concern is how to tell someone about the ostomy. It’s important to remember that supportive personal relationships can be major sources of healing after any type of surgery. It’s also important to let your partner know that sexual activity will not hurt your stoma. Ostomy surgery affects both partners in a relationship, and it’s something to which both partners must adjust-each in his or her own way. The key, of course, is understanding and communication. If having children is a concern, you’ll be happy to know that after a satisfactory recovery it is still possible for a woman who has a stoma to have children. Also many men have become fathers after having colostomy or ileostomy surgery. For men, urostomy surgery can sometimes cause a change in sexual function; however, there are men who have become fathers after having urostomy surgery. If you have questions about pregnancy, don’t hesitate to ask your doctor or ET nurse. For both men and women, it is very important to discuss the surgery openly with your spouse or loved one. Also, don’t hesitate to discuss this aspect of the surgery with your doctor and your ET nurse.5,6
Whether you have a colostomy, ileostomy or a urostomy you will have a stoma. A stoma or ostomy is a surgically created opening placed somewhere on the abdomen which is the exit point for either stool from the digestive system or urine from the urinary system. A stoma is fashioned from either large or small bowel which is turned inside out and sewn onto the skin. A stoma is red in colour and warm to the touch as it is very vascular, meaning it is well supplied with blood vessels. It is also glossy or wet looking because the bowel continually produces mucous just like the tissue from the inside of your cheeks (mouth).
There are rarely two stomas that look alike. Variations in surgical technique, body shape and composition (thickness of fatty tissue of the abdomen for example) are factors that influence what shape a stoma will take. Some are round, while others are more oval in shape. Some are flat, some protrude well. Some are big and some are small in diameter. Directly after surgery, it will take 6-8 weeks for the swelling to reduce before the stoma takes its “final shape”. But even after this, factors such as weight gain or loss, stoma prolapse or retraction (early on) and peristomal hernias can change the shape and height of a pre-existing stoma. Overall, any stoma should appear, red, wet and warm as a general rule. If there is any gradual or sudden change with the appearance of your stoma, discuss this with your surgeon/physician or ET Nurse.
The skin around your stoma, or peristomal skin, which is the skin under the adhesive part of your pouching system, should appear similar to the skin everywhere else on your abdomen. However, research indicates that many people with ostomies have skin problems and do not report or recognize them. If you are ever in doubt, it is better to ask questions and seek help from an ET Nurse who can direct you if you need further treatment from another medical professional. Small problems can turn in to big ones quickly, so better to ask sooner than later!
Remember, sometimes your skin may look pinker, redder or darker right after you take off your adhesive pouching system. This should fade away after a few minutes.
All you need to clean around your stoma is warm water and either a washcloth or a soft disposable paper towel. Using sterile gauze and wearing gloves to change your own pouching system can be expensive and is unnecessary. REMEMBER, YOU ARE NOT DEALING WITH A STERILE AREA. Using alcohol to clean the area is equally unnecessary and can be very drying to the skin. Also, it is not recommended to use baby wipes or pre-moistened towelettes as they may contain chemicals that remain trapped on the skin and can cause a rash.
Soaps, including ones that are moisturizing (Oil of Olay, Dove) are not needed and can actually hinder the pouching system from sticking well on your skin and contribute to leaks. If you are showering without wearing a pouching system and soap flows down onto your stoma and skin, just rinse the area well afterwards. This is not a concern.
When washing your stoma, you may notice small specks of blood on your cloth. This is completely normal and expected. The stoma tissue contains small blood vessels close to the surface that may bleed, especially if you are taking blood thinners.
No, this is not necessary. It may feel good to “air out”, for a while but this is not required in order to have the skin remain healthy. This may also be difficult if your stoma is active!
There is no “set time” for this. Everyone works at their own pace and becomes more and more proficient, confident and comfortable as time goes on. In the end, it shouldn’t take more than 15 minutes to complete a change if your stoma is inactive. If you continue to take a long time to change, it may be time to see an ET Nurse to see if your routine can be simplified.
There is less than a 1% incidence of a true allergy to any part of the pouching system. All parts are of the system are latex free, including the belt (if you are using one). There is a multitude of reasons for skin issues, however they are typically due to a leak in the system causing stool or urine to sit on and irritate the skin. Remember, when you first remove your pouching system, your skin may be pink, but this should fade in a few minutes. In any case, it is important to seek help from an ET Nurse sooner than later if you have concerns. Do not assume that you have an allergy or that this cannot be resolved.
No, unless your ET Nurse has suggested this for you as a SHORT TERM treatment. These products are not to be used routinely as they can build up and irritate the skin and actually prevent the pouching system from sticking properly. Statements such as “less is more”, and “keep it simple” stand true in ostomy care so that using “extras” such as wipes and powders should have a reason rather than a routine.
Using stoma powder and a protective skin spray or wipe afterwards to seal in the powder is commonly referred to as “crusting” but is only a SHORT TERM treatment for weepy skin breakdown around the stoma. If this becomes part of your routine because of recurrent skin breakdown, this should be re-evaluated and discussed with your ET Nurse as your pouching system may need to be modified to give you a better fit and actually protect your skin on its own. “Crusting” should be reserved for the “occasional” skin problem and is a very useful tool for treatment.
Skin protective sprays and wipes such as Skin Prep, Cavilon No Sting, Hollister Skin Gel etc, are overused in general partially because of the name “skin protective” itself. But these products can actually build up on your skin and prevent the adhesive pouching system from sticking. Talk to your ET Nurse to see if these products are appropriate for you.
Wound/Skin cleansers (and alcohol wipes) are expensive and unnecessary because the stoma is not a “wound”, nor is it considered a sterile area. Use of these products can also cause irritation and also hinder adherence of your pouching system. Alcohol will also dry out the skin.
Chemotherapy is a type of cancer treatment that may effect your skin and stoma. The impact of chemotherapy may be create skin problems around your stoma (peristomal skin) and the overall management of your ostomy. There are many different types of chemotherapy treatments, each with its own specific way that it affects the cancer. But not all treatments cause the same side effects to the skin and/or stoma. Your oncologist and chemotherapy nurses are the experts and will advise you about the possible side effects that may occur. They are an excellent resource to answer your questions and concerns. They can provide you with various patient handouts outlining different chemotherapy drug protocols and patient guidelines. In general, remember that your stoma is surgically created from bowel tissue, which is very similar to the tissue in your mouth. Some chemotherapy drugs affect the tissue in your mouth resulting in sores, ulcers or causing the tissue in your mouth to bleed easily. Your stoma may react the same way. You may find that your stoma bleeds easily when you are washing it or you may find tiny sores on your stoma. Your stoma may also swell. This is because the lining of your colon or intestine can become irritated and inflamed from the chemotherapy.
During chemotherapy your skin may be more sensitive. This includes peristomal stoma. The skin around your stoma may become more sensitive by becoming red and sore. Remember that gentle removal of the pouching system during changes is important when skin is fragile. If you still have your large colon, you may have an increase of mucous drainage from your anus. Again, this is because the chemotherapy can make the lining of your colon inflamed and irritated causing more mucous to be produced which will pass through the anus.
- Be gentle when changing your pouching system. Gently remove your pouching system from your skin.
- Wash your stoma and skin with warm water and a soft cloth.
- If your stoma is swollen or has enlarged, cut a larger opening in your pouching system or speak to an ET ostomy nurse and get a system to accommodate your stoma.
- If you have any concerns or questions, do not hesitate to contact an ET ostomy nurse.
Your ET or WOCN nurse deal with people from varying backgrounds, beliefs, sexual orientation and cultures. Each one of us is unique.
There is an excellent website that maybe a good resource for you. www.glo-uoaa.org.
The GLO website can be used by individuals seeking information, chapters looking for a trained visitor or for anyone wishing to expand their knowledge of the Gay or Lesbian person with an ostomy.
Stephanie Hughes from the blog, Stolen Colon, shares a wonderful video on What to Wear With an Ostomy…
Also, Stephanie Hughes of Stolen Colon, shares a video showing different swimsuit options as well:
CATSA, the Canadian government air transportation security agency, wants to be sensitive to people with special needs going through airport clearance. This includes families travelling with children, blind travellers, handicapped, and ostomates, among others.
Passengers with special needs are invited to contact CATSA via telephone (1-888-294-2202) or email (Correspondence1@catsa.gc.ca) up to 48 hours prior to flight departure.
Advise CATSA of all airports one is flying through in Canada and the flight number, day, and time of day of departure for each flight. CATSA will alert the security team at each airport so that they will be prepared for your arrival.
Larger Canadian airports have a designated aisle for screening passengers with special needs. Staff at those aisles are expected to be more informed about many disabilities, and to handle such passengers with sensitivity. One need only advise the staff person directing passengers to one of the many security clearance aisles of their special need, and they should be directed to the appropriate aisle. It is not necessarily in operation 24/7.
Lastly, in a recent informal survey of frequent flyers among the Ostomy Halifax membership, no one followed the above procedures. They simply went through whichever aisle they were directed to, made no mention of having an ostomy, and in the great majority of cases, passed through without difficulty or delay.
In general, being screened at airports in Canada is not something to worry about. However, remember that airport security staff have a very important job to do; to ensure safe flying in this country. They are serious people doing a serious job protecting YOU. If they decide to ask you to step aside for a more thorough screening, do not be nervous. It is almost certainly simply one of the random checks they do to check their security procedures. Be cooperative. Tell them you have an ostomy, rather than waiting for them to ask.
In general, you will find that the United States Transportation Security Agency’s (TSA, the American equivalent to CATSA) staff follow equivalent standards of conduct and respect for flyers that you experience in Canada, including those with special needs. However, with the much greater number of people flying in that country, and the greater number of Americans routinely carrying guns and other weapons, there are more security “incidents” at airports there than there are in Canada. The good news is that most passengers going through security are never aware of how smoothly the authorities handle such incidents.
It would take a book to discuss the many arrangements for the disabled flying in other countries. The non-answer is that the arrangements vary from many and sophisticated to rudimentary and nothing. The systems and procedures, and the security staff in developed countries are almost always of high calibre. That is not necessarily the case in less developed societies. Local ostomy chapters often have members who fly to exotic locales. It is useful to find and meet them, and listen to their advice and experiences. It will reassure you that an ostomy is almost never a basic, or even an important, obstacle to getting through airport security.
- Living with Confidence After Colostomy Surgery Â©ConvaTec
- Life after Colostomy Â©Coloplast Corp. edited by Sharon C. Evans, RN, MS, CWOCN et al
- Living with Confidence After Ileostomy Surgery Â©ConvaTec
- Life after Ileostomy Â©Coloplast Corp. edited by Sharon C. Evans, RN, MS, CWOCN et al
- Managing Your Colostomy Â©Hollister Limited
- Managing Your Urostomy Â©Hollister Limited
Life after Urostomy Â©Coloplast Corp. edited by Sharon C. Evans, RN, MS, CWOCN et al
Acknowledgements: UOAC wishes to thank Coloplast Canada Corp., ConvaTec, and Hollister Limited and CAET for permission to reprint copyrighted material. If you wish to contact these companies directly, to obtain copies of booklets or other information, please click on the company name.