What is Life like after Bladder Removal?

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.

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.....

@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.

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.

@buri BCG eliminated all signs of cancer in subsequent biopsies, but then I enrolled in a program that scans my blood for circulating tumor DNA and it showed that there is still cancer in there somewhere. Working through that now, but have to recommend the ct-DNA test.

Dude,...I am Stunned and Shocked by All of This,...I dont know what to Do,
I am Single, live by myself, Work at Fleet Farm in Wisconsin...at 62, I'm an Average Guy,....At 62, I've done everything that I wanted to do in Life,
This Cancer Killed my Dad when he was 51,...Bile Duct Cancer, 6 months he was Done,...I saw this Process and Saw him Die,...I do not Wanna die, having to go through some Major Operation, then the Chemo Starts, then the Pile of Pills...and then Bathroom Issue, I'm Single, there is No Wife or Girlfriend to Help....Dude,
on Monday I have the Second Surgery,
if it has Spread,...I am F@@ked,.. I dont think I can go through all of that, and then the End Result is Death,...To stay alive a Few Extra Weeks....
I'm Sorry I'm laying this on You,...I am Stunned,...😳

@daddyroxx2025
Okay let's calm down and take a breath. I'm going to tell you that I am two and a half years now with a neo bladder and I don't really think about it's too much because I am operating more or less the way I was before the operation. I did not get a bag but I know people that are using a bag and they have adjusted. This is not a death sentence my friend but some adjustments are necessary. My doctor at Mayo told me that I probably also have to get my bladder removed or otherwise have ongoing BSG treatments and be continuously worried about whether the tumor would reappear. He said that getting up near bladder was "the definitive solution". I am continuously tested and I am officially in remission. My only real inconvenience or problem now is night time incontinence but I can live with that. I still need to wear a diaper at night. But otherwise life goes on and I'm not compromised much. After 2 years I was able to enjoy sex again and otherwise lead a normal life except for the incontinence issues which really now are only a night time problem. The issue here if you are stage 2 which is that is what it says in your profile you are at the point where you might want to consider bladder removal. (I also had my prostate gland removed at the same time avoiding again another future problem in my opinion). I'm trying to tell you here is that you won't notice much any change in your day-to-day feelings about your intestinal area as you won't notice much difference having a neo bladder versus your original bladder. I think obviously the main point is to minimize the chance for cancer recurrence in some other organ in the body which may not be so easy to remove. The surgeons are magicians these days and I can't even tell where my penetration was in my bowel as I have no visible scar. I know the operation sounds scary and I have to say there is a long recovery period afterwards but in the end you can kind of go back to your normal life. So take heart my friend, this is survivable and I recommend you seriously consider complete bladder removal especially if it is recommended by your doctor.

@bajaman New to this All, I've had my First Surgery to Remove the Tumor, Which was Cancerious,
Now, this Monday I go in again for more Exploring ( I Guess )....I dont know what to do, I'm Confused about it All,..at 62 and live by myself,...My Doctor told me the Bladder and Prostate are a Good Possibility to Be Removed...I am Devastated by this All....I dont know how to handle any of this...
Rerouting my Urine System and have the Bag is just blowing me Away....I dont know what to do with this issue....Please Help.

I had my bladder and prostate removed +7 years ago. My Surgeon who is one of the best at Sunnybrook hospital didn’t recommend the neo bladder so went with the removal of both. So glad I did as I have been cancer free for 7 years now and get a yearly scan and tests done. At first it was frightening wearing a bag but soon got used to it and now is second nature to me. Before surgery I suffered severe urgency with my urine,getting up 3-4 times a night to pee.
Now I can sleep the night through with no interuptions and feel much better.
I use Coloplast products along with a overnight bag that holds 2 ltrs of urine.Enough to last the night. I change my day bag usually once or twice a week and my overnight one maybe every month. Very satisfied with the results. Good luck whatever way you go. Its not the end of the world. Hopes this helps you. Foss

@mikev Hi Mike. I'm 75. Which ever way you go will work. If I was your age, I might have gone with the neobladder. I wanted to go the ostomy route because of the learning factor. The thought of self catherization did not appeal to me. You hopefully have a lot more years ahead of you. Not having to deal with ostomy appliances and being able to urinate naturally is a strong issue for the neobladder. Either way, I hope for the best for you.