Neobladder recovery... Revised
Neobladder Recovery Notes
I am in my 6th 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 surgery and looked online for recovery notes but nothing I have read online adequately prepared me for the realities of the recovery period. What I have learned is that there are two main issues to deal with during the recovery period – neobladder/urine control and physical exhaustion.
Things to do in advance –
1. Get a mattress waterproofer sheet and place it over the mattress. Cover this protector sheet with your typical beddng 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 protects your sheets to some degree. I tend to sweat more when laying on a liquid-proofing sheet so the towel 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 run to the toilet.
2. 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 could clean you better than a bidet. Everyone I know who buys one loves it. Bidets cost less than $100, could be installed by anyone on any toilet in 10 minutes.
3. Buy a bunch of diapers – I am using four to five a day – and get the kind for maximum leakage. Pack a couple in a back pack or day bag along with extra pants when you go out. I also just ordered some baby wipes for quick cleans in the middle of the night especially.
4. Start shopping around for special boxer type pants that prevent leakage that spills out of the sides 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.
The hardware you will come home with –
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 uncomfortable however I've had surgery requiring a catheter before, but for anyone's first time having a catheter you'll probably be uncomfortable for a while especially during the night. I tried using Lidocaine and Tylenol neither of which really eliminated the discomfort. I tried to distract my mind from the pain by thinking positively and meditating and that seemed to help a little bit.
Before you walk out of the hospital – make sure your catheter is positioned correctly on your thigh. My most successful strategy was to use the sticker with the clasp instead of the straps. Have an experienced nurse place the sticker correctly before you leave the hospital.
You must absolutely walk in order to regain your strength. I suggest you ask for an extra night bag so you have the thicker tubes to connect to your collection bags needed for walking about. The thin wall tubing they give you to connect to your collection bags are useless if you go for a serious walk because they just pop off the connection nipples on the bags. If you cut the thicker lines off your night time bag use the thicker wall tubes for your collection bags and it will stay in place and minimize leaks on your clothing and floors. When cutting the tubing you're using from your night bag be in a sitting position, position the collection bag on the inside of your calf. You might just use the flexible tubing as your sample length to cut, replacing the thin tubes of the collection bags with the thicker tubing cut from your extra night bag.
I have heard it takes several months to manage your neobladder while it enlarges naturally over time to accommodate a capacity comparable to your original bladder. I have found that I have the ability to hold slightly more fluid each passing week.
I have learned online that it may be several months before I have adequate urine control after the neobladder gradually naturally expands and l gain more control doing pelvic muscle control exercises. One of my friends commented that it sounds like I'm "on a slow boat to China" and this is perhaps going to be true but every little improvement no matter how slight is heartening and reaffirming.
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Hello @bajaman , It sounds like you have things well under control. Keep up the exercises and urine control does steadily improve. My husband is a year and 5 months post neobladder surgery but he had many complications. His urine control is pretty normal during the day, but leaks at night are inevitable. Pads are still in use with a disposable over the top of the washable one. He is getting back toward normal activity now 8 weeks after his last surgery to repair a large incisional hernia. He will likely always have to self cath daily due to all the issues he had, but he can urinate normally also. All in all, better than bladder cancer. Good luck and keep the faith.