Neobladder Recovery Notes

I am in my sixth week of recovery from neobladder surgery and I thought I would jot down a few notes for the benefit of others. I tried to keep informed about this complex process and looked online for recovery notes from various institutions, but nothing I have read online adequately prepared me for the realities of the recovery period.

The hardware you will bring home

I needed two collection bags: one for my abdominal drainage and another for my bladder via a Foley catheter. The stent drainage mechanisms appear to be the same mechanisms used for stoma drainage. The stoma gaskets and drain lines were in place for about 3 weeks and my catheter was in place for about 4 weeks.

The stents were painless and the catheter was uncomfortable, however, I've had surgery requiring a catheter before. Those who have never had a catheter will probably be uncomfortable for a while, especially during the night. I tried using lidocaine and Tylenol, neither of which really eliminated the discomfort. I just tried to distract my mind from the pain and that seemed to help a little bit.

Before you walk out of the hospital

Make sure your catheter is placed correctly on your thigh before you are discharged. My most successful strategy was to use that sticker with the clasp instead of the straps. Have an experienced nurse place the sticker correctly before you leave.

Also, I suggest you ask for an extra night bag so you have the thicker tubes to connect to your collection bags. The thin-wall tubing they give you to connect to your collection bags is useless. When I go for a serious walk, they just pop off the connection nipples on the bags. If you cut the thicker lines off your extra nighttime bags and use the thicker wall tubes for your collection bags, they will stay in place and minimize leaks on your clothing and floors.

Actions you can take in advance of your surgery

Waterproof your bed

Get a mattress waterproofer sheet and place it on the bed or couch you plan to sleep on for a few weeks. Cover this protector sheet with your typical bed sheet. Place a thick absorbent towel for your torso in the middle of the bed on top of the sheet. This towel will catch leaks and protect your sheets to some degree. I tend to sweat more when lying on a liquid-proofing sheet, so the towel also minimizes excess sweating. You may also need this towel at first to wrap around your torso when you wake up in the middle of the night to go to the bathroom.

Get a bidet

I installed a bidet before the operation and I am so glad I did. You will have loose bowels for a few days after the operation and nothing cleans you better than a bidet. Everyone I know who buys one loves it. Bidets cost less than $100 and can be installed by anyone on any toilet in 10 minutes.

Buy lots of diapers

Buy a bunch of diapers – I am using 4 to 5 a day – and get the kind for a maximum leakage. Pack a couple in a knapsack along with extra pants when you go out. I also just ordered some baby wipes for quick cleaning in the middle of the night, especially.

Find special pants that prevent leaks

Start shopping around for special boxer-type pants that prevent leakage from spilling out of the diaper and down your thighs. You need to get mobilized as soon as possible, so anything you can do to assist in mobilization is a good thing.

Be patient

I have heard it takes several months to train your bladder and have it enlarged naturally over time to accommodate a capacity comparable to your original bladder. In my sixth week, I have found that I have the ability to hold more and more fluid.

From what I have learned online, it may be several months before I have adequate urine control. One of my friends commented that it sounds like I'm, "on the slow boat to China," and this is perhaps going to be true, but every little improvement, no matter how slight, is heartening and reaffirming.