My First Experience with a Urinary Diversion Before Bladder Removal

For most people, the words urostomy, stoma, ostomy, and ileal conduit are all foreign unless, of course, you have one or know someone who does.

I readily admit that the day the doctor told me, among other things, I would have a urostomy. I had never heard the word and had no idea what it was. I came out of the doctor's office and said to my husband, "What was that other thing the doctor said I would get?"

Talk that urinary diversion talk with me

A urostomy is a common urinary diversion. A urostomy is where an opening is created in your stomach, called a stoma, and you wear an ostomy bag attached to this to collect urine which is then emptied as needed.

There are other options if you have your bladder removed. There is a neobladder where they use part of your bowel to create a new bladder, or an Indiana pouch which is similar but involves you using a catheter to empty the bladder several times a day.

Most people touched by bladder cancer have heard of these different types of urinary diversions, even if they don't know all the detail.

Much less talked about is nephrostomies. This is also a urinary diversion. It is not the same as an ostomy but having them before my ostomy surgery did give me an insight into "life with a bag." In some ways, I think this made it easier for me to accept my ostomy bags after my surgery.

What is a nephrostomy?

A nephrostomy is an opening between the kidney and the skin. A nephrostomy tube is a thin plastic tube passed from the back, through the skin, and then through the kidney to the point where the urine collects. Its job is to drain the urine that is blocked temporarily. This allows the kidney to function properly and protects it from further damage. It also helps clear any infection.¹

A nephrostomy can be fitted to either or both kidneys. If you have one in each kidney, this is called bilateral nephrostomy. The purpose of a nephrostomy is to rest the kidneys and allow urine to leave the body where there is a blockage in one or both ureters.¹

My nephrostomies and I

People can have nephrostomies put in place for several reasons. In my case, nephrostomies were put in place after my bladder cancer diagnosis and before my ostomy surgery, as my kidney functionality had fallen to 56 percent. My nephrostomies were put in under a general anesthetic. This is not always the case and can be done with a local anesthetic as well.

The nephrostomies gave my kidneys a rest as urine passed straight from the kidneys into 2 collection bags. From there, 2 leg bags were connected to make it easier for me to empty them.

The original plan was to put a stent in my ureter to fix a blockage, but as this wasn't possible, nephrostomies were put in place instead.

My nephrostomies were left in place until 14 days after my urostomy was created to ensure the urostomy was working correctly. I had them in place for 6 weeks in total.

A warm hand-off to living with an ostomy

It was very strange initially, and I found it hard to sleep. It did, however, give me my first insight into living with a bag. While its positioning and how it worked was slightly different, it gave me an idea of what living with my ostomy bags would be like.