I have posted this a couple of times in response to specific questions by members, but someone recommended that I post it on its own. Doing so will hopefully make it easier to find and will also trigger some discussion as to additional criteria that can be added.
There is one point that I think should be emphasized: people have similar (and high) satisfaction levels with each of the options. The criteria need to be ranked according to what is important to you, as you might make a different choice than me and be equally as happy.
Any of the available choices are fully functional. The decision should reflect your preferences of the various criteria, though sometimes your doctor will over-ride your decision based on information only available during surgery. Some of the major considerations should include:
• Your general health at time of surgery and your ability to handle major surgery and potential complications;
• Evidence of cancer or abnormalities in your urethra or in close proximity;
• Your desire for "normal" and your tolerance for "different" physical body image;
• Your desire for "normal" and your tolerance for "different" visual and audio experiences in public restrooms;
• Your desire for "normal" and your tolerance for "different" relative to bringing materials into restrooms;
• Your ability or willingness to handle sleep interruptions;
• Your ability or willingness to handle night-time accidents;
• Your ability or willingness to plan your time versus remembering to bring materials;
• Your ability or willingness to accept the risk based on your sex for long-term consequences that might result with a neobladder (example: self-catherization);
• [female, as I believe all options are the same for males] Your ability or willingness to accept changes in sexual function resulting from neobladder surgery (check with surgeon on current risks, as the surgery has evolved);
• Your access to a skilled surgeon with a history of successfully installing neobladders;
• Your ability or your insurance plan's ability to cover ongoing maintenance costs.
Again, the right choice for you might be the wrong choice for me.
Any other criteria that should be added?
Rick
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Neobladder versus Ileal Conduit/Indiana Pouch
- By RickB
- Posted October 17, 2009 at 4:28 pm · 11 replies
- In Treatment choices
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Hysterectomy Incontinence Sweating Pain Menopause Neobladder
11 replies
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- Newest first
- By Cheyenne
- Posted October 17, 2009 at 4:39 pm
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Thank Rick, I remember this, it is very helpful, thank you.
- By lsh
- Posted October 18, 2009 at 7:35 am
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Thanks for your post Rick. I'm sure it will really help those who are trying to decide which diversion they will chose. The good news is that even if you don't get your first choice because of circumstances the doc finds when he/she operates, we all seem to be happy CANCER FREE.
Lynda
- By neoman
- Posted October 18, 2009 at 6:05 pm
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Just because I do not know the other reasons other than that if I had signs of cancer in the Urethea (I remember the surgeon saying that during my operation, they were going to send to pathology several samples near the opening at the bottom of the bladder to check for signs of cancer), I guess the result of that would be that I would not have a neo-bladder but a pouch of some sort coming out of my side when I woke up from surgery. I woke up with a neo-bladder.
What are the other reasons for not having a neo-bladder?
Does the sex of the person matter?
Since I am a male, and have incontenance issues, I am able to deal with the issue successfully with a condom cath. Are these issues more difficult for a female, and therefore doctors (and I do not know the percentage of neo-bladder to Indiana Pouch/Ileal Conduit and for what reason) tend to go one way or another based on that reason?
On my discussion, I raised the question that I am glad that I have a neo-bladder, but based on partly I fear the unknown.
Only when I undress from the waist down, would you know that I have a cath system. If I gain my contenance, I know I may have to cath. How long I do not know. Since I do not have to, it is hard for me to think about it. I fear that somewhat, I have cath'd and am ok with it. But I do not want to drag supplies into some bathroom. Even at work I use a public bathroom more or less. I like the condum cath because it is so easy to void my exterior bag. Infact my co-workers laugh about it. It is fast!!
But it has it's own issues. It comes off after a couple of days, I carry a spare, though easy to change. The leg bag stinks after a while.
Sex wise, nothing there yet. I do not know about females, but we men can lose our ability to have an erection. That changes the show somewhat.
Because I wear a cath, I am limited to how close I can experiance itimacy with my wife. The gear is between us down there. Though I do not have the ability to have a response, it would be nice to be close. Now there the Ileal Conduit may have its benefits.
Night time, I have to be somewhat aware of the position I sleep. I have two positions. If I stay comfortable, I can sleep most of the night. The two positions allow me to drain into a larger night bag with out kinking up the condum and leaking out. But men with prostate issues get up a lot a night. I will not have to do that unless my system kicks back in gear.
I still wear diapers. That is not sexy at all!!
My bathroom looks like a hospital room with all the supplies I have. Tape for the tube on my leg. Night time bags, spare bags, diapers, large pads, condum caths, toilet paper, and more stuff. I carry supplies in my brief case. I have supplies in the trunk of my car. I have supplies at work. If I go somewhere, I bring more supplies than I need. Just a bag for that.
This is just the way it is. I am ok with that.
I am limited to what physical activities I can do. Sweating causes the cath to come off. So summer in Katy Tx, I tend to stay indoors. Now it is cool, I worked outside today for the first time this year. Loved it!!
But I am glad I have the neo-.. now let time be the judge.. I would like to explore this issue later.. thanks for post..
- By jmch
- Posted October 18, 2009 at 6:39 pm
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when i had fibroids removed some years back my Dr wanted to do a hysterectomy (easier... for who?). I did some research and found that hysterectomies, because it is the removal of a large muscle, seem to be implicated in increased continence problems for women.
I wonder if this is a contributing factor to women having more problems with the neo and continence. ?
- By Annasvenska
- Posted October 19, 2009 at 8:05 am
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Jmch
I don't believe that any muscles were removed during my neobladder surgery and I personally haven't had any problems with incontinence either. I am (at least was very fit before my last episode at the hospital for bowelobstructions/adhesions) and had pretty strong abdominal muscles which I am positive has helped me immensely in avoiding hypercontinence.
I am curious if it would be beneficial for women facing neobladder surgery to make surge that they are at their optimal weight and also get on a stomach strengthening program. (of course not for six weeks post op) as one uses lots of abdominal muscles to void.
As far as incontinence I wonder if the strength of the supra pubic muscles plays a significant role and the time that has passed since the woman went through menopause.
I didn't need to have a hysterectomy at the time of surgery as my cancer was adenocarcinoma and it was far away from my ovaries/uterus.
Anna
- By neoman
- Posted October 19, 2009 at 10:27 pm
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I am jealous Anna, I read that you ran for 22 miles or something like that. I ran half marathons up until last July. It has been hard to leave that..
With my neo bladder, (surgery in Feb 09) I still feel that my interior hook ups are not quite feeling like (If I could go) I would be able to run.. I even have a hard time putting my arms on my tummy to rest. It is uncomfortable for what ever reason.
I too felt I was in good condition, I was running two 8 miles runs a week plus my daily training. The condtioning was vital to my getting through chemo and surgery in great shape. It did not help me in the continence arena.
Chris
- By nancynursez637
- Posted October 20, 2009 at 7:14 am
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Hi Rick, I am not in your situation so am poorly equipped to advise you, Just popped in to wish you the best of luck not only with your decision but with the process surgery and recovery
NancyN
- By birdman
- Posted October 20, 2009 at 8:06 pm
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I cant speak for all but intestinal blockages with the Neo has caused me lots of pain and I think its from the narrowing of the intestine after surgery.I know others have had this problem also.
- By RickB
- Posted October 20, 2009 at 8:11 pm
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Nancynursez637,
I'm three years post surgery, but will take all the luck you can send my way.
The list was intended for those who are trying to make a decision. I am hoping I have covered the bases, and looking for input on the criteria.
Rick
- By 15yrsurvivor
- Posted October 20, 2009 at 8:17 pm
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RickB, I cannot comment about the criteria because none of this was part of my personal experience. I did, however, give your post a "recommendation" because there is a lot of good and helpful information here for those who might need it! Thanks for taking all this time to put it together. I also appreciate your observation that
the "right" choice is different for everyone.
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