What is Life like after Bladder Removal?

I am 71F and here's my story. There was a tumor in my bladder and into the wall, but not through it. It was removed but found to have invaded the bladder wall, which would not heal itself. After 12 weeks of chemo, I was referred to a urology surgeon at Mayo to discuss bladder removal, and at first I was against it. He told me about bcan.org and it took me a week to get up the nerve to even look at that website. I am glad I did because fear of the unknown is quite scary. Having more information is less scary.

I had the urostomy surgery four weeks ago and recovered nicely. I stayed in the hospital five nights and they had me walking every day after the surgery day. The urostomy nurse visited me at the hospital every day to discuss the use of the bag. She also gave me lots of supplies to bring home. I also had home health nurses visit me twice a week for two weeks to change my bag. I am glad they brought more supplies, and they got me started on ordering supplies after I decided what I wanted.

My husband changes my bag but I will eventually change it myself. He watched a video by Hollister (maker of the bags we like) and found that most people who changed my bags were doing too much. Since the stoma changes size for a few weeks before it settles down, the short version of his routine is "snip it, click it, before you stick it." In other words, we are using a two-piece bag but he snips the hole to the correct size and clicks it onto the bag before doing anything with the adhesive covers and placing it on my body.

Also, to remove the bag, he uses an adhesive removal wipe to take off the bag, cleans the area with a damp wash cloth, and dries the area with paper towels (these turn out to be the most important steps), before the other steps.

I empty the bag every hour or two, and hook up to a night bag for sleeping. I have a walker from when I had knee surgery two years ago, and the night bag hangs on the lower rung while I am sleeping (currently on the recliner, but will eventually graduate myself to the bed). To empty the night bag, I roll the walker over the toilet, place the bag on a top rung, and open the valve to drain. Hubby rinses it out with hot water and returns the night bag and walker to an out-of-the-way location. Big note: keep the open end of the intake tube higher than the bag during storage, and use a velcro strip to hold it in place for storage.

@daddyroxx2025 Daddyrox0225, listen to Bajaman. Deep breaths, Excellent advice and from experience as well. I'm 3+ years out from a radical cystectomy and 2 rounds of 4 chemo. I tolerated the chemo well. The only issue was fatigue the day of and the day after. As several have said, yes, it's major surgery, but the option isn't good. the Bladder Cancer Advocacy Network, BCAN, has an excellent website with great advice and my options. One of which, the Survivor-to-Survivor, S2S, program will match you with a person who has experiences similar to yours. I chose the pouch option based on my lifestyle, and after an adjustment period, my life has returned to nearly what it was.

Thank You so Much for your Reply,
I'm having a Very Difficult Time with this All....Its about Choices, this One Choice has to be the Right Choice...
I cannot afford to Take a Chance with the Wrong Decision Making on my End....I need to be informed, I need Other Persons take on all of this....
I dont know enough about this whole Transistion to make a Right Choice,
Its Cancer,...Its Live with it or Die...
I get it....I'm not afraid of the Cancer, I'm afraid of the Treatment, the Side Effects, the Living a Life with a total different Outcome...The Problems that go with this AFTER THE SURGERY Part....There Removing these Organs with No Guarantee of Living a Normal Life....That is to much to adjust too....IKnow, I'm Rambling,...I'm Scared and Confused with all this...
Please Forgive Me.....

It happens. No point in getting too upset. What happens, happens. I had RC surgery exactly a year ago. The bag is the least of my worries.

Read up on Marcus Aurelius. Very inspiring (to me).

One day at a time. Hang in there.

Never compare to others, how difficult it may be, as we are all unique.

Practical: prepare for FMLA, hopefully you have a HSA/FSA. Look into home care (I found them useless but some have great experiences) and stock up on easy to heat up nutritious meals, a bed on the ground floor and so on. I started working again after 2 months. It helps me have a purpose and structure and camaraderie.

One day at a time.

For the past few weeks I have had trouble walking due to immunotherapy ($60K billed a month to insurance) but that also means it is hopefully working. So I always try to see the upside. By the end of this treatment I will be the $1M man.

@sunriseglass, based on the results of your ct-DNA test, what is the recommended course of action now? Additional treatment or active surveillance?

@colleenyoung Followed up with another TURP/biopsy, cancer has come back and is worse than ever. Exploring treatment options now, almost certainly radical cystectomy.

@sunriseglass I'm feeling fairly philosophical about the RC, especially since the alternative is my likely demise. I am at the point of considering post-surgical options, like, where will all the pee go? Neo-bladder is off the table, my RC will have to include a urethrectomy. I am inclined toward continent urine diversion options, where the storage is internal and drained by inserting a catheter into the stoma periodically. Wondering if there is anyone on here who has anything useful to contribute regarding that approach as opposed to the external bags.

Indiana pouch is rare. Ask BCAN/Inspire.

@marysews UPDATE: My stoma size has settled, and hubby ordered a punch that's the size of my stoma. When it arrives, we will test it out. Meanwhile, we have graduated to him placing the wafer with the cutout onto my skin and placing the bag over it, and then I click it together because my fingers are smaller.
About two weeks ago, the night bag was so heavy that the clear plastic clip opened and spilled onto the floor. After cleaning that up, I started the habit of placing a plastic bin under the bag. That was a good idea because the next bag did the same thing, but it was contained in the bin.

I had that happen and since the beginning I use small trash cans. Sometimes they fall over however. I always have trouble falling asleep and toss and turn. Bad idea: higher risk of detachment. Sometimes the stoma bag simply partially detaches from the appliance.