Neobladder 18 months in more nonsense

Getting ready to go home
Now comes the bit you have to do on your own, with a bit of help from your family and friends. Getting ready to be discharged from hospital can be a bit of a blur. Depending on how long you have been in some of the nastier bits have already been done, I was in for 3 weeks but some of you will be discharged much earlier than that and you may have to go back to get it all finished with. There will be the 2 stents to your kidneys to be withdrawn, this not painful but is a weird sensation as the stent tubes are pulled out, a gentle tug is all it takes but I felt them travelling across my stomach, as I said a weird sensation. The next bit will be the removal of the super-pubic drain, again not a major problem but a bit of holding your breath will get it over with. Next will be the removal of the Frankenstein staples holding your major wound together. Mine were done 3 days before I was due to go home and they stung for about 24hours, you will still be on pain medication so it should be easy to cope with.

The thing that will be left will be the in-dwelling catheter, when you first see it you will get a bit of a fright, it’s about 10mm in diameter and bright blue, this is going to be your “friend” for about 4 weeks as you start to get better. Faffing about with leg bags and tubes will be a bit of an annoyance at first but it will get easier. On the practical side its best to get organised with a few things either before you go in or get someone to organise a few things before you come home. Get a rubber ring to sit on or a blow up cushion, having your “friend” in place is not comfortable particularly if you sit on a hard seat. As far as storing supplies goes I got 2 sets of plastic drawers, one was in the bathroom with bags, syringes, saline etc and the other was in the bedroom with wound dressings, antiseptic, scissors, medication and all the bits that the nursing team needed. As you get better the contents of these drawers will change but at least you will know where everything is. I still have one set of drawers with catheters, syringes, saline and incontinence night pads and bed protectors.

After 4 weeks you will go back in to get a scan to see if there are any leaks and if all is well they will take your “friend” out, due to its size it will sting a bit but the relief of losing it will compensate. You will probably be asked to pass water naturally if you can and it is the best sensation in the world, yes I know I am weird but when it happens you will know what I mean.

Now comes the bit that takes time, you will be tasked with building up the time between going to pass water mainly via catheter for the first little while. You have to do this to expand the neobladder and get it up to the capacity the surgeon had built it for, mine was made take 500ml and it’s a case of expanding it slowly too that size, there is no rushing this bit and you will just have to learn patience. You have to do this through the night as well and we( my ever patient wife and I) found that having an alarm go off every hour,1.5 hours and then 2 hours was very tiring not on me but on her as she was still having to get up for work. I bought a Timex Expedition watch which has multiple vibrating alarms so no sound and that let me be woken up and at the same time left her to sleep.

Eventually you will manage to go naturally; gents please please follow the advice of your nurses and sit down to go. Being a hero and standing up will only lead to problems and you having to strain and do damage. Everyone will be different in terms of how long the recovery takes and how successful it will be, after 4 months I was 100% dry during the day and about 97% at night, I only wear a pad at night and that’s mainly for my own peace of mind. 18 months in I can put my hand on my heart and say we have never had the need to get up in the middle of the night and change the bed due to an “accident”, oh you will have what I call mini accidents but the pad will cope with those, one thing you might want to do is buy underpants 1 size too small so that they hold the pads securely in place.

You will never escape having to do ISC (Intermittent Self Catheterisation) but depending on how well the procedure has worked you may get to cut it down to once a month to flush the mucus and keep everything healthy. No matter how many times you need to do ISC you need to be aware of having everything as clean as possible, no need to go nuts about everything being sterile as long as it’s clean. I have never (touch wood) had an infection yet. I travel a lot with my job so I have a set of everything in a separate bag so I can carry it with me I also have an emergency pack in the back of my car so I never get caught out, that includes spare underpants, trousers and socks, you never know lol. Packing saline can be a problem if you travel but if you need to you can make clean, not sterile, saline flush by adding about 3 teaspoons of salt to a litre bottle of spring water, just make sure it’s a well known brand of water and not some local stuff produced from a tap in someone’s back yard.

Normal day to day will take a bit of getting used to and you may have to adjust what you eat to stop your neobladder producing too much mucus, simple things like avoiding coffee will help also I have to watch my favourite food, curry, this will make you produce huge quantities of mucus, remember your bladder is made out of a section of bowel and it still reacts like bowel at times. A tip I was given by my Stoma team was that if I started to bung up, and you will, I should buy a 4 pack of beer and drink it quick, that will act as a flushing agent and clear things right up. It’s not to be undertaken every night but will sort you out quite quickly. I had to get the Stoma nurse to tell my wife about this as she did not believe me at first.

One last thing for this blog, as you get better you will be limited in what you can left. DO AS YOU ARE TOLD. I will expand on this in the next blog but if you have a limit of 10lb then stick to it, ask for help even from strangers and you should get back to full health as soon as possible.

That’s is for now as this is getting a bit long. Maybe I should turn it into a book.
Take care and keep well.
Bob

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16 replies. Join the discussion

Ah, I remember those early days & nights well!
Are you still flushing with saline? I only had to do that until neo went live at day 10 post op. I use ready lubricated disposeable caths so no problem transporting & using those.

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As I work in some really hot conditions I tend to get a bit dehydrated and the mucus goes a bit thicker so I use saline just to keep things moving. I have 2 kinds of caths one for travelling that I can coil up and the other that comes in an aluminum container that cannot be bent otherwise the lube leaks out.

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I have never had to self cath, and hope that remains the case for many years to come. I don't think that's particularly unusual. Most of the time I pee standing up, only before I go to bed to I make a point to sit and make sure every drop is out. I have no limits of what I can lift beyond what my muscles will manage, and since I live on a farm, that is important. Hay bales aren't light, neither are feed bags.

I know your blog and advice is well intentioned but I am not sure your experience is as universal as you make it sound in your writing.

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RC with Neo ..Dec2011... I.m the same as mcopts I pee standing up till last pee of night when I stand ..sit and stand again ..I have not cath"d for over 11 months and am 99.999% dry in day and 98% at night and at that will only be damp not wet ....we will all find our own routine and what ever information is passed on to each other can only help in our recovery.

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Please register for a free bladder cancer webcast on July 17th where you can ask a physician your questions on-line. Go to http://goo.gl/WiQM8 to register.

WinTheFight

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Its not meant to be universal its just my experiance which I hope someone else can draw on and either take comfort from or extract what they need from. I wish I had been able to read something like the attempt I am making before I had my RC. Each is different and will find their own way.

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Bob,

I have an IC but reading your post found it to very informative, and should be of great help to many. Thanks for sharing your experiences.

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I have a neobladder but I don't remember anything like stents being removed from the kidneys and a super pubic drain? Unless they did that while I was under sedation. I had to self-cath for awhile, but haven't done so for over a year. I was never told to flush out mucous once the catheter was out after first four weeks. Yes- there are a lot of differences. I think the use of second person throws the reader off-makes them think it is what is supposed to happen.

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Hi, Bob,
While I have not gone through the trauma of losing my bladder, I try to stay up to date on the latest options, if the need arises. I was curious about the neobladder option, which seems like my best option. Was yours constructed so that eventually you can void normally? I understand that sometimes using a catheter regularly can also be an outcome.
Thanks, and best of luck,
Leopold

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Good information there Bob. Will certainly be of help to some of the new guys. My Neobladder was installed 9/16/2010. I have been lucky in that I have never had to cath, and am for all practical purposes continent during the day. Night time while sleeping is a 50/50 proposition but you know, (drumroll), that depends can take care of it most of the time.

Life is Good,

Drew

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Great information! I'm going to tell my mom about the beer :). She had those tubes in the hospital as well. Then when she went home, the hole that remained in her abdomen actually drained quite a bit for the first few days before drying up.

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Thanks Bob, I'm scheduled to have my RC and neobladder surgery Aug. 1st and I've been hammering this forum gathering all the "what to expect" information I can. Your post, and the replies have brought me a little closer to saying "I'm ready".

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Hi Leopold

Yes it was made to void normally and it works most of the time, not everyone needs to cath but there may be times when it cannot be avoided. Once you get used to it it's not that much of a chore.

Bob

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Bob,

Excellent write-up - thank you. I am sure that will help other people. FYI, I was doing frequent self-cathing but was able to wean myself off it over time. The key for me is patience - the commitment to spent more time "sitting down" and doing whatever I need to do to try to coax urine out and be 100% voided, especially at going to bed and rising. I am 2 1-2 years post op, and I still get bouts of mucus, but I can coax that out. I also continue to hydrate significantly during the day, tapering off toward night. This is good not only for the neo but for general health. Best of luck for continuing good health!

Ridgefield

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Hi Bob,
I'm sure your post will help people get some perspective on the recovery procedure, but not all the steps you listed will actually occur, depending on the surgeon and particular Neo procedure. For example, my kidney stents were removed 24 hrs post-op, my in-dwelling cath (penile) was removed 2 weeks post-op, and the supra-pubic was removed about 5 weeks post-op. I have never had to self-cath, (but I do self-medicate with a few beer each day...lol)
I am impressed that you were 97% continent at night after only 4 months, but you make no mention of how it was achieved...Kegel exercises?? Please let me know. I am 5 months post-op and 99% continent during the day, but still manage to fill a Depends each night, even with getting up every 2 hours. Perhaps I have to be more diligent with my 3x day Kegel exercises?

Please let us know
Cheers
Mark

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Hi

As I keep saying everyone will be different. Kegal excercise did nothing for me and I guess I am lucky that I have 100% continence during the day but may be due to sitting rather than standing, that way I can get more void (or should that be better void) at a time. 97% at night seems to be due to self cath last thing before bed and then I can get 5 hours un-interupted sleep.

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