Urostomies: Sharing Our Knowledge with Each Other
I have often wondered if a urostomy is something that most healthcare professionals - doctors, nurses, physician's assistants, techs - know and understand.
From the information I have gleaned from my online research, there are between 750 thousand and 1 million people in the US who have a urostomy. This would cause me to assume that many health professionals should have seen one at some time or at least be aware of their existence and purpose. Well, my experience a few days ago made me wonder.1
Urine test: Take 1
I had my annual urine test due at a hospital lab nearby. Nothing out of the ordinary - I opened my bag spout and filled up the cup. Period.
About 10 days later, I received a call from the lab that someone had "coded" the specimen wrong, so the incorrect tests were done. I was asked if I could please come back to provide a new sample. Initially, I was told I could drop off a sample myself if I had a sterile container. As a 72-year-old, who no longer sterilizes glass baby bottles, and all of my moonshine mason jars were full, I told them I would stop in when I had time.
I was also told it should be my second void of the day. I stated that I had a urostomy, as she hung up without responding.
Urine test: Take 2
Well, Wednesday was the day. After signing in, my name was finally called. I immediately informed the worker that I was there for a retest and had a urostomy. She pulled out a form and said that, yes, my first sample had never been tested and had been tossed out.
Interesting, as that is not what I was told. They claimed that some "stuff" was swimming around in it, and they needed a clean sample. I again stated that I had a urostomy. She just kept typing away.
By the way, I have a urostomy. I have a urostomy. Excuse me, but I have a urostomy
I went through the normal check-in as I had never been there before - name, address, insurance number.
Apparently, as it was a new year, we had to re-up everything. I would think that this information would automatically carry over - silly me. I then mentioned again that I had a urostomy.
The same lady handed me what looked like a small pail with horizontal flat sides, told me to lay it on the toilet, and put the seat down to hold it in place while I peed into it. Again, I said, "I have a urostomy, and just empty my bag. I do not sit down when I pee."
Whoa - wait... A minute... What? She had to get someone else to handle this. Goodness - what was this patient talking about? What? Minutes later, a lady wrote "urostomy" on the cup and handed it to me.
She asked if this was my second void of the day. Trying not to get frustrated, I again said, I have a urostomy. I just changed to a new bag, and yes - you could call this my second void of the day. Yes - let's do that. We can call this my second void.
Yep... Got it - having my second void of the day, everyone...
Just do your best
She walked me to the bathroom and said to try to fill the cup to the white line. I like to have goals in life, so that was good. She hoped it did not have any "floaty stuff" like the last time. I asked if she knew what a urostomy was because I do not have any control over that "floaty stuff."
I continued and said that I would try not to have any "floaty stuff" in my cup - which I know was mucus as a urostomy is made from my intestine. I said I would "try," She tapped me on the shoulder and said, "Please, do your best." Great, another goal I needed to try to achieve today. That was 2 before 8 am.
I filled the cup to the line, put it in the plastic bag, and set it in the basket as instructed. The same lady noticed this and said she would try to get the test done, but there looked to be a bit of residue or "something" in the urine. But she would try and see how it came back. I tapped her shoulder, smiled, and said, "Please just do your best."
Sharing our urostomy knowledge
Needless to say, I will not be going to that lab again. This experience, frustrating at times, certainly made me realize how few people in those positions know what a urostomy is, what it is made of, and how it works.
I hope that in the near future, more will be provided with this important information during training so they will not be surprised or shocked by it. Guess we can just "do our best" to educate them!
Has anyone in your family been diagnosed with bladder cancer before?
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