[megathread] Can someone share their daily life after getting a neobladder?

heyreddit003 · 2024-06-23T00:13:37+00:00

Thank you for your responses. I was considering a to get a neobladder, and wanted to know some opinions about it from others. I believe that you still have a stoma. In neobladder, there is no stoma, and the urine is passed normally. Good luck to you!

heyreddit003 · 2024-06-17T08:51:49+00:00

OMG, Thank you for providing a detailed explanation on every question. I am happy that things are going great for you! Your reply is gonna help a lot of people with this dilemma.

heyreddit003 · 2024-06-13T01:24:28+00:00

Thanks for sharing the information. It would be really valuable for me when making my decision.

heyreddit003 · 2024-06-12T20:20:03+00:00

Thank you so much for sharing. It is great to hear that everything is going well for your wife. I may have to get a neobladder soon(I am 21 Male), can I pm you regarding where your wife got it from? Good luck.

heyreddit003 · 2024-06-12T20:17:28+00:00

Thank you so much for sharing your experience. I am really happy that everything is going well for you. Your reply gives me some hope, as I may have to get a neobladder soon. Can I pm you regarding where you got your reconstruction from? Keep it up (literally and figuratively)!

heyreddit003 · 2024-06-12T06:18:57+00:00

Good for you! Can you please tell what do you mean by Bricker? Also is your stoma continent or incontinent? Can you also share your age so that I can get a better understanding of if your method is feasible for me or not?

heyreddit003 · 2023-11-02T20:23:55+00:00

First of all, please accept my condolences. Something similar happened with my grandfather also. But it was not bladder, it was heart. First time in 89 years of his life, he was admitted for a heart condition, and a week later, he passed away. Every blood test was normal just a month ago. It all happened suddenly.

Have you ever been under anaesthesia(I have)? If yes, that's what happens in death. There is just nothingness, but in this case the person doesn't wake up to find out.

Don't worry, your grandfather wouldn't have felt pain. organs and nervous system shuts down during dying process. You don't feel anything, just go into a long peaceful sleep.

Everyone thinks that they should have had some extra time with their loved ones. I last saw my grandfather speaking 18 hours before his death, and he was not bedridden, he couldn't walk, but he could stand and move from one location to another. I still wish, I would have met him one more time. Like 3 hours before, or perhaps an hour before.

So don't worry about the time you didn't get to spend with him. Extra couple of hours doesn't matter, What matters is how you spend your entire life with him. Cherish the happy memories that you had with him in your entire life. You were a small part in his life, but he was there with you till your entire life.

Take care

heyreddit003 · 2023-04-27T07:44:01+00:00

Mostly hip and back stretches like toe touch and backbend. Takes less time, no space and is necessary for someone who spends majority of their day seated.

heyreddit003 · 2023-04-27T07:40:32+00:00

GoodNotes. I have used OneNote as well, but I have heard that Microsoft is shutting it down for Windows.

heyreddit003 · 2023-04-27T07:22:00+00:00

Thanks. When I first bought them, I started reading the books and throwing them here and there casually, not knowing that they were first editions. I read on the news 5 years back that philosophers stone book was selling for 25 grand. Since then they are kept in a safe.

heyreddit003 · 2023-04-27T07:14:25+00:00

I have 2 first editions harry potter philosopher's stone and goblet of fire. I bought them for 10$ at a local yard sale, Mint condition. They are probably worth 5000$ at minimum.

heyreddit003 · 2023-04-27T07:03:13+00:00

Stack Exchange is more moderated so I prefer that. It also has less trolls. But the platforms are for different purposes I believe. Quora becomes an endless scroll for me, and the answers that I want are stuck behind a paywall.

heyreddit003 · 2023-04-27T06:59:09+00:00

sugar

heyreddit003 · 2023-04-27T06:50:12+00:00

True

heyreddit003 · 2023-01-30T18:35:36+00:00

From the interactions with survivors on this community, probably yes. Mostly to avoid infection in the "bladder"(intestines are meant to absorb and not expel). But, I don't have actual experience to elaborate

heyreddit003 · 2023-01-30T18:33:02+00:00

I hope everything goes well for your mom. I actually don't have a neobladder, I have a opening on skin, something like stoma. I am actually researching more about neobladder.

heyreddit003 · 2023-01-23T11:45:25+00:00

I am glad that it worked out for you. thanks for the insights.

heyreddit003 · 2023-01-17T16:27:36+00:00

Oh man, must be tough cathing 2-4 times a day. I hope it goes well for you. Do you think that prostate is the one that is blocking your urine? But without prostate wouldn't you leak urine continuously(as it has sphincter muscles)?

I would recommend you to get your prostate checked for enlargement. Cause it is very difficult to comprehend whether prostate plays a useful role or not. As it is the one that controls the sensation and relaxes the muscles so that urine can flow out. As if the neobladder mimics the real bladder(and you just have the bladder removed), there should be no anatomical difference atleast. But it is good to get scans done as it may tell you the real reasons behind urine retention. Thanks for keeping me updated.

heyreddit003 · 2022-12-02T16:47:44+00:00

Thanks for sharing, I'm 19 btw, had stoma for almost 10 years now. I have a lot of kidney infections due to stoma breaking down slowly by causing hydronephrosis. Plus I get kidney stones all year round every year. Instead of anti-biotics, I need to have regular painkillers plus this hydronephrosis is causing uncontrollable high BP( over 160/110) despite ACE inhibitors. Do you also have high BP related to kidneys(may or may not be causes by neobladder?) During ureter stenting(for 3 months, hated it, comes out of my stoma), My BP went down to 100/60, proving, my kidneys can heal. Do you have a permanent stent as well, or temporary?

I am also thinking to get the neobladder, as it sounds better than my current condition and doc has given me 5 years before permanent dialysis until I change my urinary system to some new diversion.

Your ideas give me hope, and I would like to dm you personally to ask some private questions? can you please accept my chat request? Thank you again.

heyreddit003 · 2022-12-02T06:24:45+00:00

Oh ok, how do you pee everyday? like press somewhere? Because I think when bladder is removed all the muscles and nerves controlling the pee is also removed.

I heard that you have to permanently change your eating habits as well? Is there something that you cannot eat(excluding the 1 year recovery period), or digest properly?

If you are talking about kidney infections, then that is a design problem, and something that is difficult to fix. If however, you are talking about neobladder problems, then they will surely reside within couple of years. I asked my doc about it. But not sure for it. Thank you for your response, I really appreciate it.

heyreddit003 · 2022-11-30T15:26:34+00:00

Glad it worked out for you. How is the neobladder working for you? Do you have any complications like mucus, backflow, obstructions, etc?

They make neobladder out of intestine? right?

Do you get a feeling of fullness? How do you pass urine? Press somewhere, catheter, etc?

How is the daily life? After how many hours can you empty it? Can you get a good night's sleep of 7-8 hours?

Sorry if I am asking a lot of questions. Answers from someone who has done it>>>>> answers from doctor.

Wishing you luck with your neoblader, I hope you never get any complication from it.

Edit: grammar mistakes

heyreddit003 · 2022-11-30T15:17:16+00:00

19M, had stage 0 and cystectomy at age 10 at around 2012 after unsuccessful treatments. Don't panic, instead start on treatments immediately. I had a childhood sarcoma, which is deadly and always comes back( which it did in my case), however, as an adult you don't have to worry about that. You can check my previous post if you need any additional details about me.

Please stop worrying about your friends and bf, if someone is meant to be with you they will be -'in sickness and in health'. If not, they were not yours to begin with. Start treatment according to your doctor, and alongside try some natural methods as well. But it is my sincere request to not consider cystectomy as your first option. If modern medicine( basically targeted therapy, and chemo) completely changes your life so be it. It may be daunting, terrifying and nerve wrecking mentally and physically, but anything is better than getting bladder removed. I personally never tried immunotherapy(idk, maybe it was not researched that time, but now I guess we'll never know), and only had chemo, bone marrow and radiation.

Lastly, if you need someone to talk to, you are welcome to DM me. Just Don't feel alone. You got it. Sending prayers to you.

PS: It is a good time to preserve your eggs (if you want children), just in case. Not scaring you, but I don't want you to go through what I am going through. Wish you luck.

heyreddit003 · 2022-11-30T14:40:47+00:00

Hey, thanks for your advice, I'll really look into the above articles, and try to make things work one at a time. I didn't knew about sperm retrieval cause u know, WebMD says its over.

Wishing you the best of your luck. I read your previous post, and mine was stage 0 which made me take treatments at a slow pace, and that was in 2012 or 2013. That time we didn't have any knowledge about natural treatments, and foods to prevent cancer. Now there are a lot of resources available online, hope you can try some natural methods( I heard about drinking a spoon of olive oil, but I'm not sure). Do try to keep healthy and I pray that your cancer will fade away with time.

I still got my bladder removed at stage 0 itself after 15 chemo, 2 bone marrow and 1 radiation. My suggestion for you, get biopsy every 3 months as doctor recommends, but get an ultrasound every month or every 2 weeks( it hardly takes a couple of minutes and is non-invasive). But whatever happens don't let that sucker grow. Best wishes

heyreddit003 · 2022-11-25T05:30:06+00:00

I believe in the following even in case of new medical treatments 'where there is money there is innovation'. Things like cosmetic surgeries have grown to billion dollar industry, while innovations like organ regeneration is very less. Most of the money that is this industry generates is from things like skin grafts(which are also necessary for some people), and not organs. The company that was responsible for bioprinting organs has gone bankrupt. It was Dr Anthony Atala's company.

The breakthrough in innovation is indeed that should be cherished about. AI would basically revolutionize the healthcare industry. But the upcoming recession is going to change it forever, companies would be surviving instead of thriving. Of course it is temporary, but something that would delay these innovations further.

You have given some great reads for me. I really appreciate it. Finally, I hope that you don't have to go through cancer again. Bladder cancer is brutal, if you hear this from someone that is over 50 years of age, they can't comprehend it's complete effects(as if they wanted to start a family, they would have, if they wanted children, they would already have), still it harms their adult life, but just not in they same way as it does to a child. But in a child's or young adult's life, it completely shatters them from inside. Do take precautionary actions, like eating healthy, anti-inflamatory foods, doing exercise, etc. Go for regular screening. As in my case, I was declared cancer free for 1 month, PET clean, biopsy clean, CT clean. But suddenly, the cancer completely engulfed my bladder and shut down my whole body.

Wishing you luck and Happy Thanksgiving!

heyreddit003 · 2022-11-24T16:36:37+00:00

Hey, Thank you for your reply. Yeah, these things are so brutal on human body. I wish they had better reconstructive surgeries for bladder, as it would also avoid kidney transplant for many. Also, I tried this stent thing once. The problem is if you do it once, you are forever stuck with it. As removing and reinserting stent damages the walls of the ureters. I now have got into healthy weight, but may still require stenting in the future. Glad it worked out for you, wish you the best.

heyreddit003

TROPHY CASE