What Can You Do Without a WOCN Near You
Having been an ostomate for 6 and a half years now and very active in the bladder cancer and ostomy communities, I know that even within the US, wound, ostomy, and continence nurses (WOCNs) are not always easily accessible to everyone. A WOCN is sometimes referred to as an ostomy or stoma nurse, though most do much more than just ostomies.
It is a tragedy, in my opinion, as these nurses should be teaching people how to care for their ostomy and peristomal skin (the skin located around your stoma). So many continuously have skin problems and ostomy leaks and believe that is normal. This is not normal!
What my WOCN helped me learn
Having an occasional skin issue or leak is typical, but having continuous problems all of the time is not! If that latter describes what you are dealing with, you likely need to see a WOCN. If you've been seeing one and still are not getting relief and solutions, you probably need to see someone else.
I'm so lucky to have a fantastic relationship with the WOCN I've been seeing since my radical cystectomy with ileal conduit and stoma placement. She is the person who marked me up for potential stoma sites, taught me how to care for my stoma and peristomal skin, and has been a constant source of support and encouragement since the early days of my bladder cancer diagnosis.
Liz with Patti, a wound,
ostomy, and continence nurse (WOCN).
For those considering surgery, I encourage you to check out the wound care services available at your hospital and in your area before surgery. I also encourage you to make friends with your WOCN and stay in touch with them. They should be your best source of support in the early days of adjusting to life with a urostomy!
Don't believe everything you read on social media
I know many people depend on social media groups for ostomy care information, but I do not recommend this. Not only have I seen some horrendous advice, but I have heard and seen the results of people doing the wrong things for their stoma and skin.
Your health is more important, and you deserve to have the support of a clinical professional in caring for the stoma challenges you experience. If you're interested in and curious about something you read in those groups, take it to your WOCN and discuss it with them before trying the techniques.
Many people also think that your urologist, surgeon, or those specialist nurses are who you should consult about these issues. However, while these people know about urostomies, they typically have minimal training about their direct, daily care of them. They rarely have continuing education or training about current protocols and products.
Since they are usually not as versed in ostomy care as a WOCN, they can help with basic ostomy needs. Still, they often won't know how to troubleshoot or be familiar with various products that can assist in making your life easier and closer to "normal."
Ostomate-focused organization and resources
Below are just a few things that I know have helped a variety of ostomates I have had contact with.
Get involved with your national ostomy organization Being involved with a national organization can be essential to connecting with others and helping to advocate in your country for the rights of ostomates and coverage for supplies, among many other things. They are a great source of information. In the US, we have the United Ostomy Associations of America (UOAA). The UOAA also holds annual conferences, provides many resources to ostomates, and distributes a quarterly magazine publication, The Phoenix, which includes columns oftentimes written by WOCN.If you are in another country, there are ostomy organizations known in at least 35 countries, and many groups welcome virtual participation in various forms if there is no support in your specific country. You can look to connect with other organizations by visiting the International Ostomy Association website.Get involved with your local ostomy organizationThis is usually the first step for many. While involvement with a national organization can be a bit daunting and much more advocacy and politically based, participation in your local support group likely focuses on support, education, and socialization with others who have gone through similar experiences. The last statistic I heard from the UOAA is that there are more than 230 Affiliated Support Groups (ASGs) across the United States. If no one is close enough to your area, they can also assist you in starting a new ASG. Some ASGs have virtual support options and invite people to subscribe to their newsletters, even if they live too far away, to be able to attend events regularly.Go to the WOCN Society websiteThe WOCN Society is the largest national, most recognized professional nursing organization in the US dedicated to advancing the practice and delivery of expert healthcare to individuals with wound, ostomy, and continence care needs. They achieve this through relevant education, effective advocacy, cutting-edge science, a supportive network, and a patient-centric approach. What I love about this organization most - from a patient perspective - is that they have a patient resource section with a ton of information on it as a directory to find a WOCN near you.Utilize the Ostomy 101 app or websiteThis free service allows you to access ostomy information, virtual support groups, and WOCN advice from your mobile device or your computer! This app was started by a passionate ostomate in San Diego who wanted to make ostomy information and assistance more accessible to anyone, regardless of where they live. To date, it has been used in 48 countries and 27 languages.Find a WOCN or Stoma Doula online for virtual consultationsYes! Virtual consultations are a thing and have been since before the pandemic! You can check with the hospital and clinic facilities near you to see if their WOCNs can offer that service, or you can search the internet for virtual WOCN services. The best results typically come from "ostomy nurse virtual visit." I only know of one WOCN who calls herself a stoma doula, but I happen to know that she is fantastic and working on getting other WOCNs on board with this trend!Have you connected to a WOCN that you love? Let us know your experience with your WOCN below.
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