I have been following this thread with interest in that I just had my bladder/prostate removed two weeks ago, have an IC and am going through the leakage problem SABI has mentioned. Thanks to all for the advice and encouragement that things will improve. It's easier to stay positive when others who have walked this path are able to share their experiences.
Alleluia!!! They finally discovered my leaking urostomy problem. My surgeon sewed some additional stitches in the skin surrounding the stoma. For the first time, I feel that I may go back to being somewhat normal again. I hope this takes care of the problem. I got my first dry night sleep .
It took a lot of phonecalls and home nurses and wasting boxes of bags, etc. and constant laundering, but now it appears the bags are holding.
I was told that the removed bladder was cancer-free, but the final path report showed one lymph node affected. They recommend 3 additional months of chemo. I barely survived the first pre-op months of chemo.
I am in the process of getting a 2nd opinion from another local Cancer center which has an excellent reputation and is not as big and impersonal as the University. SABI
I hope this works for you. I believe the exact URL is uoaa.org/forum/index.php. I found it with a google search one day and it is very much like this board where people post question, comments and then get answers. It's a wonderful site full of information.
If you google UOAA discussion board you will find a very helpful site for all urostomates. In the search just type in urostomy and you will find all kinds of helpful advise on how to get the ostomy bag from leaking and very helpful information in general.
My best wishes for your recovery.
After chemo all diagnostic tests before radical bladder cancer surgery showed no indication of metastasis, Was told by surgeon that One of 14 lymph nodes examined showed cancer cells.
What does this mean for survival?<
Many people with lymph node involvement go on to get long term survival. The cancer is still locally confined, not distant spread and is more treatable and survivable than mets that have spread further. As long as that node is now gone, I would be hopeful that you can be included in that population..
How about the bladder, was there still cancer left in the bladder or did the chemo get it?
What does your doctor say about this, are you planning on getting further treatment or waiting? What was your chemo regimen before surgery?
About your problems with the bag, I'm so sorry to hear this. But be assured there is a learning curve with all of this and it will get easier with time. You are just out of surgery and haven't had enought time to heal yet, nevermind get the hang of this new equipment.
There's a group for urostomy patient's on Yahoo, I've heard good things about it. I think it's called Urostomy. That might be a good one to join up and ask for input. You should also post this forum with ostomy concerns, but using a new subject heading that will catch the attention of browing ostomates. Also, if you are looking for info on possible chemo treatments it might be good to post again with a heading that clearly asks for input on that subject.
You're lucky to have your sister there with you now, I don't know either how anyone could survive post-op without help and loved ones around and would hate to ponder the thought.
I'm not sure where you're located, but in many larger cities there are groups called "Ostomy Mates", and they're experienced with these sorts of problems (bags not sticking to your skin). I know there's something on the WebCafe about ostomy mates but I don't recall where exactly it is. Referencing the different problems between neobladders and ileal conduit, I can tell you that I personally was incontinent for a very long time (at least it seemed so to me (it was about six weeks), but when I look back on it now it doesn't seem like it was so very bad. Something else that helps me feel that way is that it's been more than two years since my surgery, and once I dealt with the incontinence it's been mostly smooth sailing since then. I feel certain that once you get the hang of it, there will come a time when you too can look back and feel as I do, that it really wasn't that bad. That's what I hope for you, and I think you starting to think that will help you to get through everything now as well. There's a saying... "The power of positive thinking", where it comes from I don't recall, but it is very true.
I remember feeling isolated as well because every time I stood up my bladder emptied, and I'm talking about a cup or more of urine at one time. I went through lots of clothes and lots of adult diapers as well. I hated those things, but even the heavy duty pads weren't enough for the amount of urine I was loosing. Just know that you will be getting out there, and it won't be too much longer before that happens.
Now let me give you a little help in the consumption of water department, of course they want us to drink lots of water don't they. When I went to the continence clinic within the same clinic my urologists office is located, the doctor I saw told me that as long as my urine was a good color (pale yellow - yellow) then I was drinking enough water. What you need to look out for is if your urine starts getting darker that means it's concentrated and you're not drinking enough water. The other important piece of information is to restrict your fluid intake in the evening, like say start restricting it around 6 PM or sooner if you go to bed early. After awhile you'll learn how much you need to drink, how much is not enough, and how much is too much.
I hope these little bits of information will help things improve a little bit, you can even start restricting your fluids this evening and I bet you see some improvement with that one thing alone. Of course you might have a reason to drink some water at night if you have medication you need to take, just remember to try to limit it to only enough to get whatever it is down. If you find that you're thristy alot try chewing sugarless gum, except be a little careful because some people get diarrhea from the artifical sweetner. I initially chewed lots of it, but finally learned how to limit my intake. I'd put some in my mouth when I'd notice I was thirsty, but I'd just chew it for a short while just long enough to moisten the inside of my mouth and then I'd spit it out into a tissue.
Let me know how you do with cutting back on your liquids, but remember just don't cut back too much.