Few questions for fellow warriors

Gentlemen,

thank you for your responses. That's what I thought - it's just the healing process, and everyone goes through something different. I'll check with my doctor on these issues, but you're right, we tend to hold back as much as we can with complains and then end up in trouble (I ended up in ER with massive infection after trying to fight fever with Tylenol, after they removed my Malacot drain and some infection got in in the process).

As per the ureters - I have appointment for CT scan and some other tests, and with doc, 3 months from now, and he told me not to worry about it until then, focus on recovery. But, you know, it sits in the back of your head and doesn't want to go away. Oh well...

Joe

I can't wait to get back to work, get my mind occupied with something else.

i second what zach says regarding speaking with your docs. there's all sorts of weird and wonderful sensations that go with this surgery. I speak to a few people off-site in the "real life" so to speak and their stories of after-effects are all different. it's still very early for you after surgery and I was definitely getting some weird things going on 7 weeks and well beyond; weird numb areas, shockingly inconsistent poo habits and weird bleeding and pain in my abdomen. often what looks to have healed on the outside is still sorting itself out on the inside. my scrotum swelled up dreadfully after surgery and yet I visited a guy in hospital here the other day who never had that issue. im 8 or 9 months post-op now and still get the odd twinge but am more or less back to normal as you will be. I'd want more info about those abnormal cells they mentioned. id want them to be more specific. I had CIS like you but with tumour also.

Hello Joe,

I wish I could help, but I think time is really going to be your best friend in getting through this. You've had a very invasive surgery that tweaked a lot of parts of you that were never intended to be fiddled with.

As far as bowel movements, I was veering between diarrhea and constipation--at times on the same day. My doctor told me that it can take a year or so for things to settle down.

And as far as the scrotum, I had some hardware installed during my RC, so I was very sore for a while.

My feeling is that you're going to feel stronger and better as time goes by. But you really should talk to your doctor about this stuff. I tried to ignore some bleeding after surgery and ended up back in intensive care and going into shock from blood loss. Your situation doesn't sound like that, but I think many guys don't want to complain or rock the boat, and we end up in some pretty treacherous waters.

Congratulations on your quick journey to continence. That's a big relief for you, no doubt.

Joe, I wish I could be more help, but you may want to run this by someone who knows your situation more intimately than any of us possibly could. It's probably just the way you--Joe--are healing, and we all do it at different speeds and have different valleys and peaks, but sometimes it's best to err on the side of caution.

Zach

Hi,

this is my seventh week after radical cystectomy, due to bladder cancer. Considering the usual ups and downs mentioned by all warriors here in the forums, it's going pretty well.

I had to be re-admitted once because I couldn't get the BM to work right (hell on earth!) but I got over it eventually.

I have few problems though, perhaps someone who experienced similar troubles can advise. I consider these minor things, not worthy bothering my doctor - yet.

1) For about three weeks now, there are times in day when I feel very miserable. It's not the internals - it's this overall feeling, hard to describe it. Sometimes I also get nauseus when this comes. Usually early morning after BM, or night - it often forces me to retire early. I have noticed a pattern for some of it at least - some of it seem to have replaced the feeling of being hungry. I eat a little - and it's gone in few minutes. But some other times this doesn't help. Does anyone experienced this, and will it go away eventually?

2) The scrotum: After the surgery, my scrotum was twice the size, due to the liquids collecting there when one lies motionless most of the day. It got back to regular size in just two weeks, but there is a pain. They did ultrasound exam about three weeks ago, and I was told that it's just some liquid still there and it will go away eventually. But the pain is not in testicles - it is the "wiring" that goes to the abdomen, it's actually enlarged and very sensitive to touch. I have to be carefull when sitting down not to sit on it. It doesn't seem to change for about 10 days now, so I'm starting to get worried. It is not getting worse, however. Is this also something that some of you experienced and can advise upon? Maybe I need to be just little more patient?

3) After the surgery, my surgeon came and told me that they found some abnormal cells in ureters and since it could not be removed completely, they had to close me with it as is. I was told, however, that this is not a critical problem at all (of course my wife and I freaked out when we heard it...) and we just have to watch it and come for checkups more often than what would be normally required. Did anyone here experience the same thing? What is the outlook? Please be honest...

My bladder cancer was mostly carcinoma in situ, only the bottom of the bladder had something that could be considered invasive. There was no tumor, the bladder wall was just thick. But because it was everywhere in the bladder, the decision was made to go to surgery right away. No muscle invasion, it was all just in the inner layer. I'm 54 years old - and my neobladder works wonders - continent during the day already, of course night is another story for now, as everyone knows

Thank you for your help - and to the operators of this web site - thank you!
Although I never contributed until now, this is a wonderfull place to learn and find all sorts of info.

Joe