Soon to be Uro Ostomate

[Midwestosto]

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.

[Shamrock4806]

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.

[Mara]

Hello Midwestosto - I can't be of much help as I am a person with an ileostomy for many decades but want to wish you the best. And yes, there are urostomy night bags but, of course, I am not familiar with them. So best wishes for your upcoming surgery and successful recovery.

[ot dave]

Hey Midwestosto,
Sorry to hear about your struggles. Just wanted to share that every ostomy tends to be unique. What works for one of us, may not work for the rest of us and vise versa. You'll get to figuring out your ostomy and what will and won't work for you. Meeting with the ostomy nurse is a good first step. You want a good placement on your trunk that allows for movement, but doesn't affect the adhesion of your appliance. The nurse should help you find that during your appointment.
Once you start getting "real life" questions about your pouching system, come on back and ask your "you specific" questions, and you will get a ton of tips and advice that you can sort through and own your process of appliance application and use.

I think the hardest part for me was the anxiety/depression that followed the healing and appliance issues. Once I got my appliance figured out and my cancer treatments completed, I came to the reality that this thing was going to be with me forever. Depression is a legitimate issue with the introduction of an ostomy into one's life. Don't ignore it. Some people really struggle with this, and it kind of gets lost in the shuffle. For me, I needed a "come to Jesus" meeting with my wife. We had two young kids at the time, and I was struggling. After that, I was good to go. For others, some medication is necessary, sometimes counseling, and a lot of times, just time. But, some need all 3. Discuss it with your wife so that she's aware, and can keep on eye on it as well. Beating these things physically is tough, but sometimes the mental aspect can be harder, and a lot of times, others don't even recognize that it's going on.

Hope that helps some, and good luck with the surgery.

David

[Shamrock4806]

A few tricks about taking a daily shower with an ostomy bag.

You don't have to cover it up, that's just a waste of time. Just shower with your back to the water and turn left or right to get the water on your sides and slightly on your front but not directly onto the bag. A handheld sprayer works great as well for getting underside.

Reason is initially your wafer adhesion skills may not yet be up to speed and watertight, so keeping the water from hitting it directly or running down on top of it will assist in it not coming off. That and combined with taking more of a lukewarm shower to avoid sweating off what your able to keep attached.

You can dry the bag using a blow dryer cause it will get wet on the underside.

Now that my wafer ninja skills have improved over the last year I can even take hot showers with no problems, but at first you may want to take it easy.

But for many months I covered the bag up and finally realized I didn't need to do all that. Sometimes if your wafer adhesion has gaps, you can use waterproof tape along the top edge of it temporarily until your shower is done to keep runoff from getting in underneath.

[Shamrock4806]

Okay the hardest part about an ostomy is getting the dam wafer to stick to the skin correctly. So many things can interfere with good adhesion and prevent leaks however given that all ostomies are the same in this regard I can give you the tips for success I've found that works well.

1: Adhesive remover - this is used while peeling the wafer adhesive off the skin as to weaken it and facilitate its easier removal. You peel a little of the top of the wafer adhesive back and apply it to the crack of the adhesive and the skin from the top down and the remaining amount stays there working to help you peal the wafer off further. I usually do this standing over a toilet so any runoff goes in there. Again I use common oil free eye makeup remover available in the cosmetics isle of stores as the spray stuff has issues shipping fast and doesn't work nearly as well.

2: Wafer removed - at this point you need to physically scrape off any residue barrier ring or paste off the skin. I use a plastic or metal butter knife for this and then wipe it off that using toilet paper tossed into the toilet. However any solids goes into my wafer disposal bag and sealed up to prevent odor and trashed.

3 - cleaning the skin of five residue adhesive, this is where more adhesive remover is used and I like to use the eye makeup remover instead as I can soak it into the area using toilet paper to insure the skin is absolutely clean. Then take a shower or use a light amount of plain soap and water to wash it off the surface of the skin. However too much soap will dry out the skin and cause painful itching under the wafer. Again why I use the eye makeup remover as it will moisturize the deep tissue and then a light soap and water to remove it just off the surface for good adhesion. Skin should sound squeaky when rubbed with ones fingers afterwards.

4- proper drying: towel dry then exit the humid area for one that's not humid. Use a blow dryer around the stoma and other body areas to quickly dry oneself off. Then head to ones changing station. Use a little toilet paper to dab (don't wipe the stoma as it might bleed) around using a new dry piece to get up any remaining moisture. A dry to the touch skin is important for proper adhesion to occur! Very important! If output soils the skin or the adhesive before bonding then it has to be removed and the area cleaned with water only and dried well again. Why I use paste for its quick sealing ability. At this point of there are any hairs a trim using a gentle pressure of a disposable razor to keep it down or it will interfere with adhesive and hurt when removing the wafer.

5- addressing wounds: this is the hardest part because wounds can be in various stages and requires different approaches depending upon how bad they are. If bleeding and scabs you need to wait until the bleeding has stopped and use a product like Medline Marathon (expensive) to cause a scab to occur so adhesive will bond to it as it won't to wet skin. However if the wounds are light and bleed or wet up only slightly then you can use stoma powder and apply just a fine covering just over the wounds. Both are then covered up with a lite spray amount of skin protectant and allow 30 seconds to dry. This will lock things down and provide a adhesive surface for the rest to use. Skin protectant can also be used under the wafer area to protect the skin from adhesive or output a little as well. However over time it can build up on the skin and cause issues, why I use a lite plastic scrubby pad to exfoliate the skin some when the wafer is off. Skin needs to shed so once in awhile I'll do this while in the shower cleaning the area.

6- barrier adhesive: this is used just around the stoma opening to protect healthy skin from output. It's your primary line of defense against leaks. There are two product choices rings and pastes. No sting paste is best for wounds and more flexibility as it doesn't contain alcohol and thus won't sting later or dry out the skin. Rings are better for near perfect skin around the stoma opening and doesn't flex as much. Some use a heating pad on top of the wafer to get it melt faster and seal better. I use paste myself due to needing flexibility and quick sealing. I also like paste because rings get handled by fingers to stretch them out and that causes it to lose adhesion due to skin oils. Paste is applied from a tube and isn't touched at all. The width of the barrier adhesive should be as wide as one can get it to match the wafer at first then work it down less from there until leaks start occurring. Usually two or three bead rings of paste, rings have a set distance after stretched out to fit around the opening. A novice should apply rings and pastes skin side down first to ensure adhesion to the skin. However later skilled ninjas can apply it to the wafer side first as a time saving measure to have it all ready to slap the new wafer on before output occurs.

7: cutting the wafer hole: this should be done ahead of time. One accurately measures their stoma opening shape and size and matches the wafer opening. Test fitting the wafer and making reference marks on the wafer/skin edge to line up with later. If it's placed on slightly off center it will leak. The wafer is used to place downward pressure to press the barrier adhesive to the skin and the wafer for a seal. However you don't want the sharp edges of the wafer irritating the stoma opening or the skin. First off though you need to do a body contour check online to make sure your getting the right wafer appliance. Like I already mentioned previously.

8: applying the wafer: this should be done first around the stoma opening and then press the wafer adhesive down next and hold for a bit to get things to bond.

9: Warnings about applying other products under the wafer..these may either hinder or irritate the skin being trapped under the adhesive. So best is to avoid them. The only exception would be to use athletes anti fungal powder in lieu of stoma powder for skin fungal reasons as long as it's covered up with a layer of skin protectant. You'll know if you have a fungal infection because once the wafer is on there will be an intense itching under it like you need to stick something under it to scratch it's so bad.

10: Note that more frequent wafer changes may be required for healing skin or whenever a leak or irritation occurs. As one skills improve so will the date before wafer changes. There is two types of wafers, one with removable bags and those without. You likely could use bigger bags for night use and regular bags for day use both using the same wafer. If your a consumer of much alcohol you might need larger bags all the time.

Good luck and hope this helps.

[Midwestosto]

Hi and thx for taking the time to reply...All very helpful!

I'm sure I will be checking back in later and wish you all a good weekend.

THX