For IBD Nurses
July — Ostomies
Daily life presents a variety of unique challenges for individuals with IBD who have an ostomy. The amount of support needed from the nurse changes over time, as the length of time since the ostomy was created increases. Patients often become experts quickly, and many turn around to help others who are just learning to live with an ostomy. A simple Google search on key words “ostomy tips” or “ostomates” demonstrates the seemingly endless number of helpful tips ostomates offer other ostomates.
TIP #1: Equip yourself with contact information for credible ostomy resources that can help connect new ostomates with experienced ostomates and the information they have assembled for easing the adjustment period.
United Ostomy Association of America (UOAA); www.ostomy.org
The United Ostomy Associations of America is a national organization to provide support, information and advocacy to ostomates and their caregivers. From this website a wealth of information is freely available. This extensive body of ostomy-related resources is well-organized and includes such topics as:
Ostomy care and supplies
An example of the type of free information available through UOAA is the Colostomy Guide. This in-depth, informative, illustrated guide to colostomies was originally copyrighted and sold, but it is now freely available in electronic form through the UOAA website. Many additional guides are found by selecting ‘Ostomy Information’ on the left side of the homepage.
- Wound, Ostomy and Continence Nurses Society™ (WOCN®); http://www.wocn.org
- The Wound, Ostomy and Continence Nurses Society™ is a professional nursing society, which supports its members by promoting educational, clinical, and research opportunities to advance the practice and guide the delivery of expert health care to individuals with wound, ostomy and continence concerns. Some of the content of the WOCN site is only available to members; however, patients should be made aware of the link on the upper left side of the homepage titled, “PATIENT INFORMATION.” From this link they can easily download resources:
- Find a nurse in your area (updated daily)
- Related Health Care Organizations
- Partnership for Patients (a program of the Centers for Medicare & Medicaid Services)
- Patient Care & Information (text and video explanation of the advantages of having WOCN nursing care)
- Patient Care Publications (for purchase)
- Patient testimonials (text and video testimonials)
- Specialty items for WOC patients (a list of companies that sell items of interest to individuals with an ostomy, beyond meeting the basic needs for routine ostomy supplies. For example, ostomates can use the site to obtain custom apparel that eases issues such as swimming and intimate moments.)
- A limited number of WOCN publications are available without membership. For example, from the homepage, the ‘LIBRARY” link on the left leads to an option to select ‘PUBLIC LIBRARY,' from which a link is available for “Teen Chat: You and Your Ostomy (2013).” This is a 19-page peer-reviewed information sheet designed specifically for young people at the age when it is typical to experience challenging transitions in body image, even without the added stress of an ostomy. This information sheet could easily be printed and offered to a teen, or the computer savvy teen could be offered the link to be read online.
- Friends of Ostomates Worldwide - USA (FOW - USA); www.fowusa.org
- FOS - USA is a nonprofit, volunteer-run organization that provides educational materials. From the homepage, patients can click on “OSTOMY EDUCATION” at the bottom of the page; from there, they can choose to view care guides for colostomies, ileostomies, diet and nutrition, and sexuality. The guides are available in English and Spanish. FOS – USA also collects unused ostomy supplies and ships them to people in need around the world. They do not ship in the US, as there are several other options for people in the US—the manufacturers all have programs for uninsured people and ostogroup.org supplies people in the US with supplies free of charge.
- Note: If you are an organization outside the United States that helps needy ostomates, your can request supplies to be sent from FOW - USA free of charge to your port of entry. From the homepage, click on “Receive Help” and complete the application form.
- Osto Group; https://www.ostogroup.org/
- The mission of Osto Group is “to meet the needs of those who have fallen on hard times by providing them with Quality supplies and the necessities for living. In the course of accomplishing this task, we will never diminish the value of a person or the potential that they hold.”
TIP #2:Discuss with new ostomates how they can evaluate health information they find on the internet, helping to ensure that they understand qualitative differences between websites.
- Remind patients that any website that ends in “.com” is a profit-oriented website and the claims regarding products’ effectiveness may contain exaggerated advertising.
- A website that ends in “.org” is not profit-driven and may provide more reliable assessment of products.
- Help new ostomates understand that some web-based advice pages do not clearly differentiate between colostomies and ileostomies. When considering tips from the internet, new ostomates should remain alert and exercise care. Specific questions should be referred to the medical team or stoma nurse who knows his/her particular medical and surgical history.
TIP #3: Familiarize yourself with the summer-time lessons learned and taught by ostomates to ostomates—pass along applicable information to your patients.
- Encourage patients with ostomies to increase oral fluids during the summer to help maintain good hydration, especially your patients with new ostomies.
- Emphasize routine skin checks for ostomy patients during the summer, when heat and humidity may make adhesives irritating or non-adherent. Poor adherence can increase the amount enzyme-laden fecal matter that comes in contact with skin, causing erosion of the skin.
- Swimming with an ostomy is an option with an ostomy cap. Talk with patients about this option, as it may help to make their beach and pool time more enjoyable.
If you are caring for a patient who will be undergoing ostomy surgery under non-emergency circumstances, pre-operative site-marking by a Wound, Ostomy, and Continence Nurse is important. This step should be taken whenever possible, because the practice has been shown to improve quality of life for patients with a stoma. See the pre-operative stoma siting joint position statement of the American Society of Colon & Rectal Surgeons and the Wound Ostomy Continence Nurse Society.
- CCFA information about ostomy supply assistance and emotional support after ostomy surgery
- CCFA Ostomates Food Reference Chart
- Living a Full Life With and Ostomy
- Removing the Colon: Surgical Options and Opportunites
CCFA Overview of Nursing initiatives Committee
These monthly nursing tips are provided by the CCFA Nursing initiatives committee. The 2012-2015 Nursing Initiative Committee is comprised of 23 nurses from across the US. If you have suggestions for content or want more information about the Nursing Initiatives Committee please contact Orna Ehrlich, Director, Professional Education, at firstname.lastname@example.org.