An updated Ostomy and Continent Diversion Patient Bill of Rights (PBOR) was officially adopted at the UOAA National Conference in August 2017 and I am so excited to tell you all about why this document is such a big deal for us ostomates and how you can use it.

Why Ostomy Patients Need a Patient Bill of Rights

The PBOR is a guide for ostomy patients and families to use as they navigate from preoperative counseling to post-operative care and support. It’s great because it helps ostomy patients and families know what is reasonable to request, giving them a clear way to start a dialogue and collaborate with their health care providers to ensure the best possible outcomes for their surgery and care.

What does this dialogue and high level of care look like?  I had a poster-child experience with this, so I’ll tell you what my experience was like.  Preoperatively, the WOCN came to mark me and basically gave me a crash course in ostomies.  She taught me how to apply an ostomy appliance and gave me some samples. She also took a lot of time to answer all of my questions about how my ostomy would affect my living, told me about a couple of accessories that she’d heard of and suggested attending the local UOAA support group meeting.  Her taking the time to share all of that knowledge with me preoperatively was great, because I was able to absorb what she said and soak it in (without the drowsiness of pain meds).

When she came to check on me after surgery, she encouraged me to practice changing my appliance on a plastic stoma in front of her, reiterating what she felt were the key things to know.  In fact, I was resistant to practice because I was tired and in pain, but she insisted and then left the plastic stoma practice material with me. She came back at least one more time to help me actually change my pouch, told me that she had ordered a starter kit for me from one of the manufacturers and left me with more information about how to order supplies on my own.  This is the type of attention and care that every patient should have.

Did you have a similar experience? Or are you one of the patients who received inadequate care who left the hospital after surgery unprepared and uneducated about how to care for your stoma and get supplies? Did you have access to a Wound, Ostomy, and Continence Nurse (WOCN) or other certified ostomy medical clinician?  Did you know that WOCNs existed? Or support groups?

How to Use the PBOR

It turns out my experience is not as common as I would have thought or hoped.  And that’s exactly why the PBOR exists and why we should utilize it for ourselves and share it with others.  UOAA put together a fantastic resource for the top 10 ways we should use the PBOR. If you haven’t already, have a look at it and see which of their suggestions you have already utilized or could implement as you go through your ostomy life.

I use the PBOR in a number of ways, including spreading awareness by writing about it here, sharing it with my family and support system when I’m headed to the hospital or doctor, holding my healthcare professionals to a high standard of information exchange (I ask A LOT of questions), going to support groups and thanking the WOCNs who also attend for being there and being active within our community, and by encouraging other patients to speak up if they feel like their rights are not being met. My hope is that eventually we will raise enough awareness about ostomies that the PBOR is the standard of care received, without question.

How have you already used/been using the Patient Bill of Rights to advocate for your care as an ostomate?