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very confused
Posted by GEO on July 4, 2008 at 11:15 amI have to have my RC in 12 days. I have not made a decision yet as far as neo-bladder or Ileal conduit. I have read all the positives and negatives concerning the neo-bladder but not much information on the Ileal conduit. I’m 51 years old. I’m a very active person. I like to ride motorcycles, ski, golf, party!, I work with the public. As far as the neo-bladder, I’m afraid of the length of surgury time, recovery time, having to look to see where the rest room is every time I go out somewhere. having to get up every 2 – 3 hours at night (never get a good nights sleep for the rest of my life), Accidents, training the new bladder, infections, self cathing, having to monitor how much liquid I drink before going to bed – I like to drink socially beer / wine. What kind of problems will I have IF and when I get older? Is all this really worth it???
I have not found much information from people my age who have choosen the Ileal conduit. How much inconvenience is it, how much maintenance, what problems have they had – accidents – odors – leaks – problems maintaining or changing.
I’m running out of time on making this decision and I’m really confused and afraid of making the wrong decision!!!! PLEASE HELP….
Thanks, Georgemikeg replied 16 years, 7 months ago 14 Members · 30 Replies -
30 Replies
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No, you do not lose bladder control. Whatever stage you are at with your neo-bladder and pelvic floor muscle strengthing, does not just “go away” because of drinking. If you were totally drunk, you might forget to pee and then have become a little incontinent, but not because of loss of muscle control. If you were completely wasted would you lose control of your colon? You’d have to be really, really out of it…not likely at a dinner with your wife.
Your pelvic floor muscles and the urethra sphincter control the release of urine through the urethra. Both of these recover and get stronger after the operation..but it can take several months.
Anyway, you couldn’t lose bladder control…you won’t have one! :)
I pee less now than before the operation.
Mike Greenberg
Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 231 very important thing to remember is..without this operation (regardless of dervision)WE WOULD DIE !!!
i seem to forget that every now & then..sorry
so no matter which you choose..you will live..you will adapte and you will be fine
you must have faith
its up to you
grampadonut
dx t2-g3
05/07/08GuestJuly 14, 2008 at 5:44 pmGeorge,
One last thing, about the difference between the bag and the neo, with the neo your worry is about incontinence it seems, your emotional make-up has alot to do with your choice, we recently counceled a man who was having a hard time accepting his bag, his emotional self was rejecting the fact he had this thing on his side, finally after other issues he had smoothed out he has acceprted it well and has moved on. So being we are all made up differently emotionally speaking, your decision has to be your own, get whatever makes you more comfortable with yourself for your lifestyle. One thing about the bag is there is no incontinence from day one. My husband was 67, so we wanted to have the least problemmatic, we have and always have accepted the bag, small price to pay as he has his life….GingerHello George,
In the first few months of recovery I had several accidents in what was the learning curve.
When I coughed or laughed or had the hickups then sometimes I would have a dribble. Nothing dramatic just a few dribbles and this was absorbed by the incontinence pad.
These accidents are rare for me now…one year post RC although I still wear a day time and night time pad in my underwear just in case. I guess it is my security blanket even though in the day I do not leak.
During the night I wake automatically to urinate and rarely leak and when I do it is because I am too tired and sleep on through. I use the bathroom just before bed and wake once during the night.
I enjoy lifes pleasures and drink wine and beer and eat whatever I choose.
The urge to urinate is different now with a full feeling in my lower abdomin and I can hold my urine for much longer than with my original bladder.
If I am planning on going out for a meal or visiting the cinema or theatre then I use the bathroom just before and after.
Regards
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & CisplatinumGuestJuly 14, 2008 at 5:18 pmGeorge,
Here’s the thing ,,if you choose the neo which sounds like you have, it will be up to you as to its performance. Going to dinner after recovery say 2 months later. you may or may not have full control. So its depending on how well you do and how soon you have it mastered. Everyone has a different story about that. Most wear pads to be sure at least for awhile. At this point if your consumed by this thoughts, maybe your still wavering back and forth, the bag is still an option. Whatever the choice, you will be in my thoughts and prayers, George good luck tomorrow.
Ginger and Gene
best wishes to you
i have my operation on 8/1
we’ll have to compare stiches !!!! :-)
grampadonut
dx t2-g3
05/07/08Thanks again everyone for all your support… One quick question about neo bladders. Say me and my wife go out to dinner some evening and have several glasses of wine and get relaxed. Will I lose all control and have accidents? Is it worth all the embarassment? Do you have a lot of surprise unexpected accidents.
Thanks much,
GeorgeGuestJuly 14, 2008 at 3:58 pmGeorge,
We all know the anxious feelings that go with having an r/c. Today is a good day to relax , believe us when we say its not as bad as it seems. Recovery is most important, you will be fine , home soon, and doing the walking, and the resting, gaining the strength you will need to be the 100 percent you again. I will keep you in my thoughts and prayers,,Gene had his surgery Sept. 14th 2007, in January we were in Vegas,, Next step Vegas!!!!! Ginger and Gene
all the best george. and don’t worry, in time you will feel normal again. it doesn’t seem like it now. but you will
good luck
tim
Hi George
Just wanted to wish you the best for your surgery, whatever choice you make will I’m sure be fine. I’m due for R/C on the 5th of August. Unfortunately, because of the extent of the disease, lymph node involvement, and a heart attack last October, I can only have the external bag. But, as you know, they are a lot of other guys and gals, who have gone through this.
Take care and again the best of luck!
regards
Snowy (Paul)
Hello George,
As you have read by the replies to your post we are all happy and proud of our diversions whatever type that may be.
Mostly a diversion is chosen depending on our own personal health and other medical problems that we may have.
I hope you manage to clear your mind playing golf today and finalize your diversion decision.
As you know all surgeries carry a risk even if we have our wisdom teeth pulled and recovery is different for everyone.
RC is a radical surgery but try to focus now on calming your mind and relaxing your body in preparation for this life saving surgery.
I wish you all the very best and look forward to your update when you have recovered enough to do so….
Sending positive thoughts…
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & CisplatinumHi George,
Good wishes for you for wednesday, Will be thinking of you. and looking forward to your posts as you recover
FlamencoWell, today is my last day of being normal. Tomorrow I start my prep for surgury on wednesday. Thanks everyone for the great information. I’m about 80% sure of going with the neo bladder. I’m still very afraid of the complications several people have had post op. I’m still not convinced the neo is the way to go. I’m going to play a round of golf today and go for a long motorcycle ride. hopefully I’ll make up my mind…
Thanks,
GeorgeGuestJuly 9, 2008 at 4:27 pmI was going for the Neo but when my surgeon opened me up he said he didn’t like what he saw for doing the Neo. I got the Indiana Pouch and things happen for a reason I am very satisfied with it. It’s been over a yr now and I can usually go 5 hrs if I am not drinking any beers. Also now I set my alarm for the AM but most times I don’t need it because I get this pressure in my pouch and I know I have to go kind of like when I had a real bladder and it wakes me up. You shouldn’t just have to have the 2 opts the Neo or the Bag find a good cancer hospital that does all three if you really want the Indian Pouch. I was treated at the Univ of Penn by Dr. Malkowicz and he does like 250 RC’s a year and capable of doing any of them. But in the long run it is your decision. Good Luck, Joe :)
Everyone goes through this tough decision. I’m not sure if this board has a searchable history, but many people have posted about this problem (including me). My Experience with a Neo-bladder has been very postive. I am 8 months post-op and pee every 3 or 4 hours. This is actually less often than I used to go and there is not the “urge” to go, which ironically is easier to live with. It is still neccessary to fully empty the neo-bladder to prevent infection and it does take me a little longer to urinate and there is mucous in the urine. Getting up at nite is neccessary and very common for everyone as they age, but the neo-bladder requires it. No big deal. My life is back to normal so far, and one quickly adjusts to the schedule of urination. There is a 2 to 3 month period of diapers and pads and learning to cope. It seems like a small price to pay now, and again I’m only 8 months post-op and 59 years old. It certainly seems more convienient now, as all the other diversions also need more care and at the same intervals. I think the operation takes the same amount of time for an Indiana pouch and a neo-bladder, and I don’t think this should be a factor. There are risks with either diversions and you should be aware of them. If things go well there is no need for catheterization, but I believe there is a 15 % chance of that or other complications which is much reduced in younger people. The experience of the surgeon is also a big factor in the success rate. I do not use pads or diapers at all, but occasionly have a drip at night that leaves a tiny spot on my boxers if I go to bed late, drink a lot and am lazy about getting up. I can live with that.
I was watching the show “Hopkins” and it reminded me of my surgery and the anxiety I felt at the time (My surgery was at Hopkins). The whole thing is and was very real and frightening, but the anxiety has lessened over time. I know it will never leave me, but I live every day fully anyway…what choice we have? I believe in speaking frankly about my experiences and if you have any other questions let me know
Good Luck!
Michael
Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23Sign In to reply.
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