Anyone have experience with the Ileal Neobladder?

12 years 1 month ago #41076 by sara.anne
Alister, we all seem to be assuming that you are male! If that is correct, you are getting all the right advice. However, females do not have near the success with a neobladder that males do and the advice would be quite different.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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12 years 1 month ago #41071 by mmc
Allister,

Welcome to the club. Sorry you had to be here.

My case is a bit different. I have the neobladder (Oct 2008) and had some complications.

Everyone is different so don't assume you'd have the same result. Get the best darn surgeon you can find. They should perform AT LEAST 50 a year. Get to the best hospital you can with the best nursing staff with experience treating bladder cancer patients.

I do have to catheterize. I didn't at first but my neobladder got overstretched so I couldn't really empty it. I can squeeze and push and get some out but I can't get empty so I'd have to go every couple hours. Instead, I choose (yes, as weird as that sounds, I choose) to catheterize every time I go. This way I go about once every four hours or so and I get completely empty.

The whole catheter thing is WAY scarier thinking about it than it is doing it. I was scared to death of that and did NOT want to have to catheterize. Ask me if I think it's a big deal now. Go ahead, ask me. OK, if you insist, I will tell you. It's no big deal. I mean really, really, really no big deal at all.

The reason it would hurt when getting a catheter for BCG or getting a cystoscopy was the prostate. They take that sucker out when they take the bladder. So, after getting that out, it is a piece of cake. I'll bet you fifty bucks I could do my own cystoscopy now if they'd let me.

My doctor says, "Why don't you try to get as much out as you can without it and then just use the catheter a couple times a day?" My response is "Why do I want to waste five minutes scrunching and squeezing and rutching around trying to get the urine out if I can just use that 16 French catheter and be empty of 800 cc of urine in seconds? If I dropped my catheter or something, then I'd do that but otherwise, what is the point?

Hopefully, you won't have any complications and you won't have to catheterize. If you do though, it is not a big deal without a prostate. Quite honestly, I had so darn many problems with my prostate before this surgery I was happy to get it out. Not quite as happy as getting rid of the cancer of the bladder, but it was a source of frustration for years. I used to have to get up at night about every hour to hour and half. I used to have leave business meetings repeatedly to go to the bathroom. No more! I can outlast the best of them. I use the stall instead of the urinal but again, no big deal.

I don't leak at all during the day. I do leak at night so I have taken to wearing condom catheters. I put it on, hook it up to a bag and go to sleep. I don't get up in the night for anything. I get the best sleep I've had in years. This part is a bit of a pain because I have to be sure I'm good and empty if I fall asleep on a plane or something. I can go for an hour or so without leaking so a Sunday nap is OK as long as I empty before the nap.

I do not recommend the condom catheter to anyone recovering from surgery during the training period. The only time you want to use something like that is if you've given up on night time continence. 90+% or so of men with neobladders get night time continence. I am in the minority.

Would I do it again? Yes. If I knew with absolute certainty that I wasn't going to get night time continence and I'd have to catheterize every time I went, I'd still probably try for the neo.

Good luck on your surgery! I hope I didn't scare you. My point is really that, to me, it is not a bid deal. I am one happy camper and I am not going to die from bladder cancer. I'm over three years cancer free now and plan on staying that way.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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12 years 1 month ago #41065 by dukel
Hi Alister, Sorry you have a need to be here. I too have a Neobladder. I will tell you how I am doing, but want you to know first, I an not telling you what to do. This is just how I have done. I am a 65yr old male, and have had my neo for a little over two years. The surgery is very tough, but doable. I have been very fortunate! I have never had to cath, and that is something i worried about. So far so good.
I leak just a little some nights and ware a pad at night. Almost never leak doing the day. I have sex the same as i had before surgery and need no pills. Not everyone is this fortunate. I had a great doctor and have been very lucky.
I do have a little kidney problem, but that is mostly do to a lot of chemo from other cancers over the past 20yrs. One thing i would tell you is to have a plan well a head of time, so you will not need to make a hurried decision. Anything else i can tell you just ask.
Wishing you the best.
Duke

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12 years 1 month ago #41064 by GKLINE
Alister
So sorry you are here. I wish you didn't need to be here. But Welcome Welcome Welcome.

I have a neo bladder. It is an amazing work of the surgeon's skill. It is a bladder replacment made from your intestine. My surgeon also removed my prostate and replumbed me so I work normally.... almost. There are leakage issues and surprises in the night but I will take the trade off.
I have never needed to catherize yet. I was fortunate NOT to have an infection and I am looking at the long term optimistically. I have found that I must maintain a schedule for bathroom visits. It seems as though the bladder fills up, and if I don't keep the schedule, I get a strong pain in my kidney area. My Dr. says this is not good and I must void by the clock.
There must be some kidney worries, as I am always tested each visit for checkups. Along with blood, urine, and scans each visit. (this started as every 3 months.... but now, 3 years out, I am in the 6 month checkup group)

The Dr determined that you can have a neobladder is a good sign. not everyone is that lucky. You must be in good health and have a positive lifestyle for him to invest 6-8 hours in surgery to preform this operation. Not everyone qualifies. Men are more likely to get a neo, as women have difficulty with this and are likely to another method.

I am sure there are others who will chime in here and have a go at this. So you will realize how lucky you are.

I am sure you feel lucky indeed :laugh: :laugh:
Sorry, just a bit of neo comedy.

Best of luck
George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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12 years 1 month ago #41063 by Alister1111
Hello,

I am newly diagnosed with bladder cancer and removal of the bladder has been recommended. Does anyone have a neobladder and could you tell me about your experience? I'm concerned about possibly needing to flush with a catheter, potential kidney problems or other long term effects. Any info would be much appreciated. Thank you!

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