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Living with a Neobladder, please share your story.
I live in Germany with my wife and daughter. Recently, I underwent surgery to remove a tumor from my bladder. The tumor pathology report indicated that it was pT2a-b, the doctor recommended bladder removal after 2 cycles of chemo. The surgery will be done in Germany, so I can be close to my family. I am very scared and not sure what I can expect.
I have completed 2 cycles of chemo (each 3 cycle was three weeks) and did a CT scan a week after the last treatment. Good news is that the chemo has significantly reduced the tumor, I was glad to see that all this chemo sickness did have some benefit. This was supposed to be the end of the chemo and then remove the bladder this week. However, my Doctor wants me to complete another cycle before the surgery. He wants to reduce the size of the tumor even further before he removes the bladder. I do not like the idea of doing any more chemo, but I do like his reasoning and I will follow his advice.
I am still very nervous and scared, he will be creating a neobladder from my small intestine and that makes things even more nerve-racking for me. I was hoping to hear from other males that have had the neobladder surgery and survived to share their story.
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70 Replies
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A heads up, you may not find that control comes immediately. As well as the normal problem of learning to control the sphincter muscles, post surgery the muscles may be at their weakest. Don’t panic, stick with the exercises. Read through the posts here to see advice from myself and others on this tricky area. I was hopeless for the first couple of weeks, but suddenly it started to work. So well in fact that I got into the bad habit of sometimes forgetting to ‘go’ for 5 and 6 hours. My sphincters got so strong that I sometimes got sudden pain from backing up into the kidneys before any leakage.
You have to be cautious with alcohol, because even a moderate amount makes everything (including those sphincters) relax! And that can cause embarrassing leakage. -
Thank you, Falcon, for your post. I’m attempting to eat “normal” but still only on small amounts at a time. Trying to maintain a daily Metamucil or similar but tends to build up gas pains before I get relief.
I know everyone’s system is different. To all in the group, are there foods I should stay away from while just starting out or just “power” through it?
My neo-bladder tube comes out Monday so will be healing that up and just going “normal” every couple hours. Somewhat anxious on the process but thanking God it is all working like it is supposed to work.
Thanks, again!
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You seem to be doing well. You should find that the bladder will stretch over time and you can last longer. I can go about 4 hours now. You might also find over time ( and its years) that your body starts to develop the ability to detect a full bladder, almost like it did with a normal bladder. It seems that the weight of a full bladder can trigger nerve endings to send signals to your brain, not unlike the tingle you used to get.
In theory removing about 9ft of the colon to make the bladder should make little or no difference to your system. But in practice, I found that it certainly did. You might get back to normal soon, but as my system recovered it got into a cycle that has remained almost the same for over 20 years. Three to four days of constipation, 3 to 4 days of normal stools, 2 days of loose urgent stools finishing in diarrhea, which cleans me out, then the cycle starts again. Surgeon has never been able to understand it, but it has never changed. It can be a nuisance, and occasionally embarassing, but never seems to have done any permanent harm. -
Thank you for this string. Today marks 30 days since my surgery, just got the foley removed today and one more week with a capped neo-bladder tube, just in case… Last 3 days experiencing constipation, even with Metamucil and prune juice. Sounds like I need to up my fluid intake as well as more walking. Other suggestions are welcome. Am told to set my alarm for every two hours to “go”. Seems to be quite the feat and I’m exhausted. What else do I need to do? Thank you in advance!
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I’m 9 weeks out and after initial recovery foley I have never self cathed and in fact my Doc said, “what?” when I asked him about self Cath. He said, why? Only if something troubling would require it, and he doubted there would be any.
As far as mucus, it’s not as thick as semen if you stay hydrated.
Drink 8-10 ounces an hour, walk a brisk 1-2 miles a day minimum.
Eat well. (Yes, I use Tobasco sauce on my eggs! ) -
Howdy,
Now into my 9th post week and for the most part doing great. However, I have had two UTI’s nearly back to back. Doc told me to not freak out as it is the most common issue for new neobladders, so we shall see.
My bowel movement? Regular but I really need to eat healthy or pass some really hard stuff. Lots of fresh veggies and dried figs!
But… do the power walk everyday, 1-2 miles, then go to work in my boat shop.
8-12 ounces and hour is what I drink to keep thing flowing -
Hey Leroy, all great posts that will help you…. I would not worry about the mucus too much.I actually look at it as not such a bad thing at all, many of us may very well have contributed to our bladder cancer situation by not hydrating enough and allowing toxic urine to hang around too long. I know that I was very guilty of that. The mucus will let you know when you aren’t drinking enough ( it’ll be globby if that’s a word). When you are well hydrated your urine is fairly clear with flecks floating around. I have never self catheterized and only had 1 UTI ( after I was catheterized for 8 days after a double knee replacement). All the comments about ab work and fitness is very true and very important. I’m 28 months since RC and very very thankful that this op is possible. It’s really great to be alive. By the way I’m 68 and still working as a building contractor and with all my new parts am able to do much more than before all this. Orillia.
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Hi gary, I also had mine done in 2017. Thank you for sharing, I’m now 66 and I could not have said it any better. Leroy, you’ll do fine. Stay active and stay hydrated.
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Hi, Leeroy,
I have had my neobladder since 2017, so I will go off of my memories. I know there are a lot of questions that go through your mind. The surgery is not too bad but it was an 8.5 hour surgery. Practice doing the Kegels now so you are used to doing it after the surgery, that is key to gaining control of your new bladder. You will have to self catheterize yourself until you are able to completely empty the bladder on your own. It is really not that painful and I only had to do it for a couple of weeks after the surgery. I have read that some people still have to use a catheter once in a while but I have not had to do since 2017.
As far as the mucus is concerned, I still have mucus do this day but it is not as bad as it was when I first started. At night, initially, you will want to set an alarm for every two or three hours to wake up and empty the bladder. Keep in mind you will have “accidents” during the night so be prepared for it but don’t let that discourage you in any way. It does get better as time goes on. I am at the point now where I feel a slight burning sensation in my abdomen during the night so I wake up and empty. Some nights it is only once others it is two or three depending on how much liquids I drank during the evening.
When you wake up from the surgery it is very scary, you will have tubes coming out of your abdomen and a catheter but it is only temporary (my last tube was removed within three weeks of the surgery).
Here is my best advice for a speedy recovery. Make sure you are in good shape before the surgery. I walked every day before the surgery, almost a speed walking. The day after my surgery I started walking down the halls of Thomas Jefferson Hospital in Philadelphia (that is where I had my surgery done at). I walked four or fives times a day while I was there because I wanted to spend as little time in there as possible (I was only in the hospital for seven days).
When you go home you will probably have to give yourself a Lovonox shot in the stomach for 21 days to prevent blood clots, which to me was the scariest part of the whole thing but I easily got used to doing it. As for electing to do the neobladder, it was the best decision for me. I am 62 years old and very active. I love to go on vacations to where ever there is a beach so having a tube coming out my abdomen was not an option. I am alive and only have to see my doctor once a year.
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Hi
I’ve just been told I need to get a neo bladder
Did you start to learn the muscle exercises pre opp or you wait until after surgery?
During the night do you practice?
I heard you have to set alarms every night 4-6hrs to empty bladder..is that true & for good?
How did you go with the mucus problem?
We’re you given tablets for that to minimise it?
I don’t fancy having to self catheter…
Any thing else you can think to add.?
Thanks -
Hi
I’m looking to do this surgery soon.
How is the mucus build up?
Do you have to self catheter at home for it?
If so ,How is the pain when doing it? -
Hi
I’ve just been diagnosed with muscle invasive and it’s suggested to get bladder out for a neo bladder.
Just wondering what’s you can tell me about the surgery,how painful was it in recovery in hospital, how bad is the mucus you get?
Does it ease after hospital?
I heard their are tablets to take to minimise it, do you take them?
How is it learning to empty the bladder?
Did you have to self catheter at home for the mucus? If so, How is the pain?
Anything else you might be able to add?Thanks
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Re Blood in urine, in one of my earlier posts I described that this can happen after neobladder, and sometimes can be quite scary, eg urine that looked like red wine! But it has never turned out to be sinister, always just some minor inflammation, or inflammation which unchecked can become a raging infection because of all the bacteria present. Letting you bladder stretch too much can cause some irritation. Don’t ignore, but don’t panic either. The lack of nerve endings means that the typical symptoms of UTI may not be present. I tend to keep some antibiotics on hand to self treat if I suspect this, and only go to my urologist if it doesn’t go away in a couple of days or so..
I am now into 23 years with a neobladder, and I am still 100% daytime continent, but nighttimes are not so good as they were. I leak a little most nights, not enough to be a full accident and require pads, but enough to be a bit of an issue. I am certain the main contributor is not failure to contain, its failure to properly empty before retiring to bed. So instead of starting the night with an empty bladder, I have a ‘heads’ start which fills up faster than I wake up! -
Way to go Boat . My experience was similar to yours. Quick recovery and early fitness regime. I’m now 26 months in since diagnosis and 24 months since RC with neobladder.This reply is for you Boat but more fo Falcon one month back. I started having sporadic blood traces in my mucus, usually just one at a time and only off and on. One a week then maybe not for a month , then two days in a row. I’d had a double knee replacement operation 11 months ago , had to be cathed for a week which resulted in a bad infection. Anyway , I thought for awhile these traces were just residuals from the infection coming out over time,( and that may be the case , since the neobladder has some folds and pockets ). Anyway, finally my surgeon gave me a thorough exam,(2 cultures ,2 cytology tests, a flexypeakaboo, and a CT scan with contrast, and all came back no problem. So what’s with the blood? Who knows is about the explanation I got. Over the last 11 months I’ve been trying to get some scientific feedback on this phenomena, to no avail. So it could be strenuous excercise, which I get a lot of through my work but I just wanted to cherp in that it happens and it doesn’t necessarily mean something sinister. Orillia.
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I am 65 yrs old. T1 bladder cancer, prostate cancer. T1 showed up in 12months after 12 BCG treatments for Ta/cis.
I had my bladder, prostate, and specific nymph glands removed last week, on 01/23/20. I was home five days later. Today 2/2 is my 9th day at home. I went home with Foley catheter, Supra Pubic catheter, and a peretonium catheter.
How did I get out in 5 days? I did what I was told to do.
1. I got pre-op physical therapy for pelvic floor muscle exercises, and practice. I went into surgery with a very clear understanding and control of this group of muscles.
2. Get up and walk as soon as you can. I was up walking 12 hours after surgery. On day three I walked over a half a mile. Day four and five I walked a mile each day.
3. HYDRATE, hydrate, hydrate. Drink 8 ounces of water, every waking hour. (This I m told will also be my new normal fluid intake)
4. Get off the opioids ASAP. It slows down the bowel!
5. Get that bowel working! Eat good food. Leafy green vegetables, Irish oatmeal, etc, etc. along with intense protein like chicken, fish and lean cuts of meat. Good food is two fold… For the healing process, and to get that bowel moving. My bowel movement has been getting back to normal already.
I was experiencing cramps and water diarrhea in the hospital, and one day at home. It turned out it was my reaction to Senna. Senna was too intense of a laxative for me. Switched to Miralax, and A-OK.
6. PMA! Keep a “POSITIVE MENTAL ATTITUDE”I have been blessed with extended life. Truly, what can I complain about?
Will I face future complications? Yes, perhaps I will. However, I am not going to speculate or worry about what “may” happen. I’ll face it when and if it shows up.
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