very confused

15 years 8 months ago #18795 by Gene Beane
Replied by Gene Beane on topic very confused
Hi George,

Generally my wife does the replying, but in this case since I have the outside bag I want to let you know how I feel about it. I am 67, I had my r/c on Sept. 14 2007 at the Cleveland Clinic. I had a heart attack 8 months prior and had 4 stents. After looking at the possibilities , neo, external bag, and a lenghthy conversation with my wife, I decided on the external bag. Did I want the neo, I thought so, for me I wanted no part of cathing myself, or wearing pads all the time or a chance I couldn't get it to work properly.(leaking etc.) Then my heart surgeon said best to go with the bag, so he actually made up my mind in the end.
Any deversion you choose will require an emotional acceptance. The bag fits for me, I do everything I did before, golf, swim, and the last thing have sex with my wife. My wife would say , golf was first on the agenda. The thing with the bag is to have great stoma nurses who help you get the right bag for your body type. Then its all about changing it properly. I do that once a week. No odor comes from the bag. You cannot see it under my clothes. I have gotten real picky on how I put it on, Since Sept. I had 3 leaks due to my ignorance, I didn'tsmooth it out correctly.
So my friend, its a big decision, but make the decision and go for it, never turn back..we have Rick and Peter on the forum they are bag guys too if you need to talk to them as well. I can give you my phone number if you want to talk ..one thing is, your going to be fine!!! Gene Beane

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15 years 8 months ago #18794 by Dan62
Replied by Dan62 on topic very confused
Hi George,

I had the RC & neobladder on March 13. At the time of surgery I still wasn't sure I had made the right decision; just for the same reasons you are concerned with.

I'm 60 and also active. Now that I'm 3.5 months into it, I'm very glad to have the neobladder.

Although those with the external bag are also content with their decision, there are some unpleasentries involved with the external bag (all of the options have pluses and minuses). Generally, when you get the neobladder, you have to wear an external bag for about three weeks while the neobladder heals. I found it very uncomfortable. I had continuous rashes (bad rashes) where it was against my skin. I was always washing it and applying ointment. Also, I had difficulty removing the bag (the adhesive is very effective). Although I’m sure I would have eventually overcome these problems, I was very glad to be rid of it.

The first few weeks with the neobladder are admittedly discouraging because it only holds 100-200 cc. Over the past three months, mine now holds 400-500 cc. I'm aiming for 500-600, which I should accomplish in another month.

I did the cathing for the first month, but it didn't seem to be accomplishing anything, so I discontinued it.

Although I was skeptical about getting up during the night (12:00, 3:00), my body quickly adapted, and I go right back to sleep. When I reach my 500-600 goal, I'll go to just once a night (1:30). When you are trying to stretch your bladder, you have to keep some pressure on it, so I drink extra water before bedtime and during the night. After it is stretches to 500-600, I will cut back on the water.

I started driving a week after surgery (yes, I know this is too soon), and went back to work four weeks after surgery. The need to urinate every 2-3 hours has not been a problem. Rather, the problem (for me) is trying to remember to drink enough water to keep pressure on the bladder. Sometimes I’ll realize that I’ve gone four or five hours because I haven’t had enough to drink.

I wear pads day and night. Leakage during the day is now rare, and I will probably be discontinuing the daytime pads after I reach my capacity goal. Not sure about the nighttime pad prognosis. At night, I don’t leak unless the accumulated urine exceeds my capacity. When I cut back on the nighttime water intake, I expect the leakage to stop—time will tell.

I have absolutely no problem riding my Harley, my boat, or my kayak. I waited eight weeks before getting on the Harley or into the boats.

Life now seems 90% normal, and should be 99% in a few more months.

Good luck,
Dan

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15 years 8 months ago #18793 by Betsy Mae
Replied by Betsy Mae on topic very confused
Hi!
From my experience the neobladder did not take too long to train. The first few weeks were the hardest as you have to empty it (however that needs to be done) every 2 hours as it needs gentle stretching. Once you get to being able to go every 4 hours life gets much easier. Men tend to be able to void naturally due to their previous plumbing as far as I can tell. I think you would never want to be far from a loo whichever option you go for as urostomy bags only hold about 500ml and if you had another type of diversion you would need to cath anyway. Good luck with your decision. At least you found this excellent site before surgery - I wish I had as a lot of my concerns could have been answered pre op.
Regards,
Betsy Mae

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15 years 8 months ago #18790 by Mel09
Replied by Mel09 on topic very confused
Hi George,

Don't know if I can help but....when I took my father to a specialist in NJ (back before we knew his cancer had spread) he told us that he likes to reconstruct the bladder in anyone under the age of 70. It is of course a personal decision and he also told us that it takes at least a year to retrain yourself and, as you mentioned, the side effects can be unpleasant.Do you think that you will be unable to be active with the ileal conduit? Has the Indiana Pouch been raised as an option? I am sure that in the end, you will choose what is right for you. I am actually finding myself jealous that you still have this option avaliable. (I know that probably sounds really bad!)

You will be in my thoughts and prayers!!! Please keep us posted!

Melissa

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15 years 8 months ago #18789 by grampadonut
Replied by grampadonut on topic very confused
i'm having my operation 8/1 and for all the reasons you stated..i'm having the ext bag. i also ride motorcycle and feel 4-5 on bike is not a good thing for new bladder.plus learning curve/problems at nite..just too old for that. i,m 66yrs old and am not concerned with what others may say about apperance (overweight/bald/glasses)so not much left to be vain about
i wish you good luck with your desicsion..and it is YOUR CHOICE !!

grampadonut
dx t2-g3
05/07/08

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15 years 8 months ago #18787 by newbie08
Replied by newbie08 on topic very confused
Hi George,

I found I started to cry when I was reading your post, its like you were reading my mind...every question and fear you wrote is exactly what's going through my (and my familys) head at the moment! My dad is 55 years old (a very young 55) and as you know from my previous post he has just started 3 months of chemo, after this he will have to have an RC and decide what diversion he wants...as you are probably feeling, I know all he wants is to keep his bladder and I think if it wasn't for all of us, his family and friends he might think that was an option :( But he has now faced the reality that the bladder will have to come out...suppose that's the first step, and you seem to be at that stage too! Like you, my dad has a motorcycle he loves to ride, plays golf every week, is very social (loves a few pints of beer - like all us Irish :) ) etc etc...so we/he have all the same concerns that you have! Unfortunately I don't have any of the answers but I just want to let you know that we are going through the same and know how you are feeling!

Just to let you know, at the moment I think my dad is leaning towards the neobladder, the main reason is that the doc was very positive about the outcome and we have spoken and heard from (alot on this site!) people who have the neobladder and it seems to works well (after a training period!)...WHEN my dad beats this disease, he'd like to be back to "normal" as much as possible!
I'm sure you will recieve great responses (alot better than mine anyway :S ) from many who have had to make the same decision as you and it seems which ever diversion someone chooses they adapt to it because they are ALIVE.

I'll be thinking of you and anxious to hear what you decide and how you are getting on!
Take care.

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