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Hello,
Glad to have found the forum...
I've been battling bladder cancer the last 3.5 years, initially a carcinoma/stage 0, treatment with BCG
65 years young and wife and I are both now retired
In April my Cysto showed 2 tumors which were diagnosed with T1 and removed via cysto...Just when I thought I might have it beat too!
Urologist(s) and Oncologists both recommend remove of bladder and prostate
Surgery next week, first meeting with Stoma nurse on Friday.
So thats the background
We live in the midwest, empty nesters, 2 big dogs and a lovely artist/daughter in LA
I've been slowly dipping myself into online readings, youtube, how to's etc. At a rate I thought I could handler over the last mos or so.
Am of course anxious about the surgery and recovery, thankful for the quality of our care team and personal support
Am hopeful for a cancer free outcome of course
I have the usual questions you've probably heard a million times by now:
How difficult will recovery be from surgery? From a new way of eliminating waste?
How long will my adjustment be to a new, normal life?
Am being told to take it real easy 6-8 wks post surgery
Concerned about infections
Scared of leaks
Concerned about sleeping: I assume I will gravitate right away to a night bag
I hope my dogs wont be scared of me when I get home?!
I hope I can get to a football game this September and feel comfortable doing so!
Thx and of course my best to everyone here.
Soon to be Uro Ostomate
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Shamrock4806
- Posts: 368
- Joined: 2024-02-22 13:00:22
Re: Soon to be Uro Ostomate
Welcome to the forum and hopefully I can help a little despite having an illeostomy and not a urostomy.
Recovery after may take some time and it's best not to do any strenuous activities less you cause a hernia to develop. So clear everything with your doctor before proceeding.
Next your likely going to have to learn to sleep only on your back. Maybe later as your wafer/bag ninja skills improve you can know your limitations and even go swimming.
To train yourself to sleep only your back is easy, just sleep with a pillow under each arm for several nights until your trained. I do it now all the time and think nothing of it, like it's normal. It's to naturally prevent accidents in the middle of the night.
Another thing to know is I think the adhesive removers sold by ostomy companies are not as good as they could be and this causes issues with product and barrier adhesion. I've found oil free eye makeup remover to be an excellent cleaner and skin conditioner as long as it's followed by a lite regular soap and water wash to remove it off the surface of your skin afterwards. The rest goes deep and keeps the skin healthy.
Far as I know there isn't any day or night bags, they are the same and just drain out when you need it. The matter is more of how long you can keep a wafer successfully attached to your body without it leaking and that will take time and experience. But it's certainly got to be a lot easier than the other type ostomies as it's just urine, not food waste which can vary quite a bit. Usual wear time for ostomy wafers is anywhere up to about 5 and even 7 days depending upon your ninja skills. However if not that good yet then it can be replaced much more often unfortunately, which can get expensive.
You'll learn soon enough to feel the weight of a full bag (actually 1/3 full) and it will be automatic to just get up and use the restroom. Urology bags I think just have a spout so you could get creative if you wanted to to tube up at night into a tank on the bedroom floor.
I would take the Coloplast online body contour test to see what sort of otosmy appliance would be best for you. They by far make the absolute best, well thought out products that don't look like they were designed back in the 18th century or something. Unfortunately some hospitals are budget conscious and rip off wafers daily as to look at the healing going around the stoma so cheaper quality is best for them. However you want to make a wafer last so quality matters as it lasts longer and you don't need to look at your stoma as it's already pretty much healed up.
At first your going to be changing your wafer more often as wounds heal, but as time progresses and the wounds heal you'll get longer wafer wear times. Eventually you'll find an amount of days that works best for you and your body contour etc.
Recovery after may take some time and it's best not to do any strenuous activities less you cause a hernia to develop. So clear everything with your doctor before proceeding.
Next your likely going to have to learn to sleep only on your back. Maybe later as your wafer/bag ninja skills improve you can know your limitations and even go swimming.
To train yourself to sleep only your back is easy, just sleep with a pillow under each arm for several nights until your trained. I do it now all the time and think nothing of it, like it's normal. It's to naturally prevent accidents in the middle of the night.
Another thing to know is I think the adhesive removers sold by ostomy companies are not as good as they could be and this causes issues with product and barrier adhesion. I've found oil free eye makeup remover to be an excellent cleaner and skin conditioner as long as it's followed by a lite regular soap and water wash to remove it off the surface of your skin afterwards. The rest goes deep and keeps the skin healthy.
Far as I know there isn't any day or night bags, they are the same and just drain out when you need it. The matter is more of how long you can keep a wafer successfully attached to your body without it leaking and that will take time and experience. But it's certainly got to be a lot easier than the other type ostomies as it's just urine, not food waste which can vary quite a bit. Usual wear time for ostomy wafers is anywhere up to about 5 and even 7 days depending upon your ninja skills. However if not that good yet then it can be replaced much more often unfortunately, which can get expensive.
You'll learn soon enough to feel the weight of a full bag (actually 1/3 full) and it will be automatic to just get up and use the restroom. Urology bags I think just have a spout so you could get creative if you wanted to to tube up at night into a tank on the bedroom floor.
I would take the Coloplast online body contour test to see what sort of otosmy appliance would be best for you. They by far make the absolute best, well thought out products that don't look like they were designed back in the 18th century or something. Unfortunately some hospitals are budget conscious and rip off wafers daily as to look at the healing going around the stoma so cheaper quality is best for them. However you want to make a wafer last so quality matters as it lasts longer and you don't need to look at your stoma as it's already pretty much healed up.
At first your going to be changing your wafer more often as wounds heal, but as time progresses and the wounds heal you'll get longer wafer wear times. Eventually you'll find an amount of days that works best for you and your body contour etc.
I get knocked down, but I get up again
You're never gonna keep me down...
You're never gonna keep me down...