Neobladder or Ileal Conduit. Recently someone posted on https://cancerconnection.ca looking for personal experience with the neobladder. It was suggested they contact me for my thoughts. I realized I have not really talked about that decision since the early days when I was going through the same research and decision making. It has been three years since my surgery, so this a bit of an update having lived with it now.
Every male and female will have to consider these options when going through the research to make an informed decision before surgery. I can’t speak to the female end of the question, of course, although I am certain similar considerations come into play.
My first choice and the decision I made was for the Neobladder. The thought of everything externally being essentially the same in appearance and functionality was really the primary consideration at the time. There is only one chance to get it right. If one option doesn’t work as expected, there isn’t an option to change to the other. It is a one-shot deal. In my case, once I was opened up, it was apparent the neobladder was not technically possible and the Ileal conduit was installed instead.
In hindsight, from my experience with the Ileal conduit, the conundrum was more from a vanity perspective than a functionally practical one. The reality is I have cancer, normal is off the table. My questions and consideration should have been more focused on quality of life going forward, and with a process with the fewest likely complications and problems.
The Neobladder would replace the existing bladder with small intestine and then plumb out through the urethra as the bladder had been. A real bladder is built with nerves and muscles specifically for the purpose of 1) detecting when the bladder was full and needing to be dealt with and 2) aiding in the emptying of the bladder with its muscles.
Replacing the bladder with intestine (Neobladder), neither the muscle or nerves would exist. One would need to learn to control the abdominal and lower pelvic muscles in a completely different way to deal with the draining of the Neobladder. The use of a catheter may also be required to ensure the Neobladder drains completely. Learning how to determine when the Neobladder was full and needing emptying is also a challenge. The procedure, as I understood it, was more prone to complications and comes with its own list of issues. Living with it can also have complications and greater risks of infection. Even so, it was, at that time, my first choice.
Since my surgery, I have only known one person that had the Neobladder; a female. I have been told she had many problems with it. She struggled with complications and infections. She has since passed. I do not know if it was the result of complications with the Neobladder itself, or cancer. I do know her quality of life while alive was negatively impacted by the complications the Neobladder added to her life.
We are dealing with cancer and it is not a forgiving disease, and these results are not black and white by any means. The Neobladder is offered as one of the options so it is safe to assume many go that route and have no significant issues with it. I personally only know of the one person and that was her experience.
Three years with the Ileal Conduit and counting
I have had the Ileal conduit for 3 years now, and while it is certainly not perfect, from a practical perspective, it is far better in my opinion. Quality of life should be the deciding factor. I honestly believe that given the option again, knowing what I know, it would have been a no-brainer and I would have opted directly for the Ileal Conduit.
The Ileal conduit does require a plastic bag glued externally to the abdomen and the kidneys drain to fill the external bag. A quick and subtle hand swipe of your abdomen at any moment in time tells you if the bag needs to be emptied and you deal with it accordingly. At night, I attach a two-liter external bag to the existing bag which eliminates concerns of the attached bag becoming too full, or having to get up in the middle of the night to drain.
The urostomy is, however, an external fixation, attached to the abdomen by adhesive. It is a man-made product and does fail. Initially, I was changing the flange and bag every 3-4 days. My skin was not used to being coated in adhesive 24-7, plus I received urine burns constantly.
With time, practice, and toughing of the skin all has changed. I now go 5-8 days between changes. Urine burn is rare. There is still some discomfort removing the old flange to replace it with the new, but it is a minimal experience.
I have opted to use the two piece flange/bag. The flexibility of the two-part system seems better for me. I can unlock the connection between the bag and flange and rotate the bag as needed. This is a great option at night when I go from a vertical posture to horizontal. I rotate the bag 90 degrees, connect the night bag and I am good to go.
Functionally, over the last 3 years, I have had zero issues with the Ileal Conduit. It is healthy. The flow of the kidneys is near perfect. The stoma (the part of the small intestine used as the conduit that protrudes through the abdomen wall) has remained very healthy. Any complications I have experienced have been from the man-made product externally. Nothing that could be in any way considered life-threatening. That one factor has made me a huge fan of the Ileal Conduit. Keep it simple.
The day to day living with the Ileal conduit is not without its challenges though. Urine is collected externally in the bag. It is visible and can be seen by others hanging there. It can create unease in those not used to seeing such a thing, but that aesthetic can be dealt with. Some wear their bag tucked into their pants, I have elected to allow it to hang freely.
I have a long torso, and with the added length of the urostomy bag hanging down, finding shirts of sufficient length to cover the bag has been an ongoing challenge. I have dealt with it and have been able to find solutions off the shelf.
Other issues include failures. At night I attach a two-liter bag that sits in a bucket at the side of the bed. The connection between the urostomy pouch and the night bag is a pressure fit fitting. There have been several instances where I have rolled over in bed the wrong way which forced the connection to open and thus soaking the bed with urine. This is without question a stressful evening. We have since covered the mattress with puppy training pads to prevent further damage to the mattress.
With the two-piece urostomy, I have also had cases where it has leaked, and there have been times when I bumped the connection of the bag and flange, thus causing the bag to pop off. Both of these types of failures have occurred at inopportune times resulting in a degree of embarrassment and creating a situation requiring immediate attention.
Of all the issues I have experienced with the Ileal conduit, none have been related to the actual Ileal conduit itself. It has been functioning perfectly since it was created. All the issues I have cited have been human error or issues with the man-made products. As for the quality of life with cancer, in my opinion, whatever one has to do to minimize the stresses on the body is the best choice. With that in mind, I firmly believe the Ileal conduit, for me at least, was the best option.