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worried about neo-bladder

12 years 1 month ago #8036 by timb
Eileen

For my part, I went with the neo bladder. For what it's worth, Ive never had to self cath - only a couple of times at the beginning and that was just to prove to myself that I could if I had to. And, really, it wasn't great but it also wasn't nearly as bad as the thought of it. The only disadvantage I have at the moment is a bit of nighttime leakage which is annoying but comes and goes and is just part of my life now. It's improving all the time. Daytime continence for me is excellent and I feel 100% confident. If I ever leak - which is nearly never - you know it's coming and can take action. I work hard and have an active social life. With a neobladder your husband will be able to do all the activities you mention and, if he has time (;))and his nerve sparing goes as expected, he should be back in the saddle in a year or two. He may need a bit of help with meds in that department.

I think the issue he faces is very similar to mine. I nearly went with the pouch as it seems like a neater and more manageable option with a lesser learning curve. Also I couldn't imagine something like a bit of bowel trying to mimic the perfect muscular machine that is the regular bladder. Im sure I would have been happy with the pouch (as people on here who opted for it seem to be pretty much universally) but am glad I went with my neo as I think I probably have a lesser dependence on apparatus and it does, as you say, give me a nearly normal urinating experience (!)

If your husband goes with the neo you can go a long way to helping him with what is a committed regimen of kegels and healing. I believe it is a very good choice.

I didn't want to offend you above but what you said did come across, to a male veteran of pelvic surgery like myself, as a bit flippant. Its a long and hard road the cystectomy option -whatever diversion you choose- and its course varies widely. One also has to take into account the fact that men don't have the same confrontation to their biology that women have. We don't give birth, have periods, breasts or, generally, leakage. Not til later any way. I think this probably does put us at a slight disadvantage or at least a different tilt. A few of the women I know who've had kids can only dream of the continence I have now. And pads are a regular part of most womens lives from an early age. It's all new to us blokes! Even the act of going into a shop and buying a pack of pads is a challenge! Not that Im in any way trying to say "poor us" or it's worse for us. It's just different with different challenges.

Anyway, Im glad for you both that you have a loving relationship. Its a great asset at this time

T

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12 years 1 month ago #8025 by mikeg
hi to all - this is mike's wife, eileen. i know that i can seem harsh, abrasive, blunt, cuts to the chase, tactless, etc. believe me, it's not the first time i've been told that and it certainly won't be the last. i am a very up-front person. my poor husband, after more than 25 years of marriage and two children, is used to me by now. lol!!

anyway, let me first thank everyone who writes or responds to anything on this website. mike and i check it multiple times a day. it's our online support group. it's the only place we can go where everyone is going through the exact same thing. so we are both grateful to have found this forum.

let me set the record straight - i love my husband very very much. i am with him 100%. we researched endlessly to find the best doctor/hospital/treatment plan, etc. we live in the philly area and are going to hopkins in baltimore (2 1/2 hrs. away) for the surgery. i called every doctor i know, and i know quite a few, to have them help us, network, ask around, research, etc., to help us with our decision. one of our good friends is an oncologist, (harvard undergrad, cornell medical school - brilliant guy) and he read the studies for us on neoadjuvant chemotherapy vs. just having the RC. anyway, we now feel comfortable with the care plan. the only remaining thing to be decided is what kind of diversion. i really feel that mike is the perfect candidate for the neobladder. he is 58, looks 48, is very VERY fit, is self taught in so many things (plays guitar, computer whiz, runs a large business very successfully, races his sailboat (J-22), plays golf (only started 8 years ago, is self-taught, and is a 12 handicap), and is ranked #1 in men's doubles in middle states tennis in 55 and over bracket (also self-taught in tennis). i think this is a man who with some patience, persistence, and determination can learn to be continent with a neobladder. yes, he will have a difficult first year, undoubtedly. but i believe that in the long run he will be happier with the neobladder. some of you think i "hammered" him, and beat up on him, and am not supportive. on the contrary, i think i am helping him to see the long term view of the recovery process. i think he is very fortunate that he has these options. obviously, the most important thing to both of us is to save his life. i want my husband here for at least the next 25 years; hopefully more. i will support whatever decision he makes. but he hasn't made the decision yet, and i don't want him to rule out the neobladder because he's afraid of self-catheterization. that's the wrong reason to rule it out in my opinion.

i also know that he really likes to have sex, and will be very sad if he can't, so that is why i asked the question about sex. if he is sad, i will be also, believe me.

anyway, i hope some of you have a better understanding of where i am coming from. michael and i are both very strong people. i just don't know if he believes how strong he actually is.

Eileen

Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23

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12 years 1 month ago #8007 by timb
just trying to keep the peace!

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12 years 1 month ago #8004 by Mike
1. Joe, is it a problem carrying around all the stuff you need for the stoma?
2. Joe, I have one more question if you don't mind.
How long is the process of lubing, inserting, and whaterver else is neccessary to drain out the urine? 1 minute, 5 minutes, 10 minutes, etc?


Gordon I know am not the only one to face this situation but those 2 questions if I am not blind were addressed to me ok. Then you step in with your post and on top of that your not even going to say anything other then tell Mike to go talk to D61. This is an open board then let D61 come here and make a post if so chooses. Since you know so much how bout I just sit back and you post for awhile and I'll take it easy. Or feel free to answer those 2 questions up top there.

;)

I hope you do carry on responding Gordon. with respect to Joe, I saw what you were trying to do there. It can get a little confusing here sometimes. Both of you are valuable and helpful to this community of people.

Tim

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12 years 1 month ago #8000 by timb
I hope you do carry on responding Gordon. with respect to Joe, I saw what you were trying to do there. It can get a little confusing here sometimes. Both of you are valuable and helpful to this community of people.

Tim

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12 years 1 month ago #7999 by Gordon
Joe,

I certainly did not mean to step on your toes. I was simply responding to a person (Mike) asking for input on his decision - an important decision that most of us have faced. You are not the only person to have faced this decision. Nor are you the first to have "researched the three main diversions to the T". Please remember this is an open thread. If my post offended you, it was inadvertent and I am truly sorry. Given that the thread was some what long and involved several posts, I am somewhat perplexed by your angry response. In the future if you want to carry on a discussion with a poster in private, I suggest you use email.

You can be assured I will not respond further to this thread - my dog ain't big enough. And I sure as hell don't want to get intangled in any threads within threads webs. lol

Gordon

age 70
Dx 10/03
neobladder 9/4/04

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