From Bladder Removal to Living with an Ostomy Bag | Margo's Bladder Cancer Story | The Patient Story

[@bonniesparks5746]

My brother in law is 82 years of age, a retired judge and has two bags. As I am writing this he is out riding his apple red Harley Davidson. He has a wonderful attitude and is fabulous and fun. Super,special guy.

[@dianacabanova5776]

love this !

[@MikeBrown-dk7or]

Excellent. I have one bag and ride my electric bike twice a day in a hilly area. When possible I also swim twice a day.The biggest moment for me was when I found out I could wash my stoma and change my bag while in the shower. Just need all the tools close at hand.

[@gino2634]

Sounds like a great man.

[@J.G.817]

I'm so happy that you made it through your cystectomy, I found out I had bladder cancer and prostate cancer,under went the same procedure, I now have a ostomy and living a much more cautious about everything life.Its good to be alive.😅

[@sal1959ful]

About to have my surgery on the 29th Aug 2023 . Thank you I am excited that I get to stay alive , I’m 64 . My partner is amazing and my family great support.

[@markme3259]

…how you doing?

[@heatherish0588]

I've been having chemo for bladder cancer and am scheduled for bladder removal in November. Thank you for uploading this video. ❤

[@markme3259]

…how you doing?

[@javamanV3]

Thank you both! I am starting BGC in a couple of days and am so appreciative of all this info! I feel armed with knowledge!

[@philipbroggio9315]

I joined Fight Bladder Cancer Charity based in UK . This has been very helpful . There is a very active Facebook group with loads of support.

[@user-crpsdiaries]

I lost my bladder to IC, when I was 28. I'm now 53. I've still lived with extreme frequency ever since. Its been rough, & I've been completely alone since I was 28 with that. No docs or medical people know anything about it. It's hard to leave the house when needing to be near a washroom at all times. Theres leaks with a urostomy to deal with too, not to mention phantom pain which weren't warned about. It's been a lonely road with zero support. Like she said the good thing is I can stand up to pee. I can also sleep through the night hooked up to a night drainage bag.

[@yarbie35]

I to have IC. I've been wanting mine removed for a while now because of the pain. Someone said I could have fantom pains but to me fantom pains aren't near as painful as what I'm going thru with the IC I go January 2nd to see if they can remove mine.

[@user-crpsdiaries]

@yarbie35 phantom pain is brutal & having a urostomy is rough too. I'd rethink it. There is no guarantee the frequency will resolve either. Mine never did & it's worse when you don't have an option to hold it anymore. Ostomy supplies are very costly and the medical world knows nothing about ostomies. The surgery & recovery are also brutal. After you've recovered & learned how to change your ostomy yourself, you're on your own. I know you're suffering, I've been there, but it's a whole other kind of suffering after.

[@kristieb.7740]

@@yarbie35 Most IC removal surgeries seem to be successful. I’ve talked to a lot of women since I’m considering it myself. Wish you luck!

[@casandrabullock9497]

​@@user-crpsdiariesAgreed. 100 percent. My comment is in the thread. I'm Cassie and I understand.💜✌️

[@carriehryniewich9879]

@@yarbie35I had my bladder removed 4/25/23. I had IC so bad I couldn’t eat anything. I did not have any phantom pain at all and still don’t. Don’t let that stop you from doing it. Things are good now. It was totally worth it.

[@yarbie35]

God bless you and thank you. Your a warrior. I'm hoping for the same. I go January 2nd in hopes they will consider removing mine. Thank you so much

[@hawkinsubiquitous-2]

Thanks for sharing your story. Very good to know you and your husband are moving forward with this new chapter of Life.

[@davdav3945]

Metamorphosis definitely sounds better. 👍🏽, thank you for sharing your story. 🌻

[@casandrabullock9497]

I was born with Hinman Allen Syndrome. I was not diagnosed until I was 4. I was admitted to UCLA over 100 times. Born in 74 i was dependent on pain killers by age 6 ( demoral). I had several surgeries , many procedures,nephrostomy tubes, stents, and 7 ureter reimplantations. I did have a neo bladder built out of my sigmoid colon. It saved my life as hydronephrosis took over my kidneys. Because of scar tissue I lost my ovaries to cysts and my fallopian tubes to tumors. My uterus was fused to my bladder and I used catheters from the age of 6 till I was 46 when I had my bladder and uterus removed. I now have a urostomy and ive been married 24 years. Intimacy is out of the question because i have so many incisions and scars. I hate my stoma and I have such a complicated case im in the teaching books at UCLA. I have been denied disability and that's crazy because I spent a year in a loony bin because of suicide attempts. I have medical PTSD and im alone. I live in Salt Lake City and I have no one to talk to about having your private parts poked and prodded so young. I was powerless and angry. I wasn't supposed to live to be an adult and now im 49. If anyone knows people to talk to please let me know. I hate Facebook and social media. I just need a friend who understands. Thank you. Take care.💜✌️ Cassie

[@PeggyButler-kr5rb]

Wow, I could see how you've went through so much. So sorry but sometimes when we suffer, we push on and fight. I know a bit about fighting. When I was a kid, I had asthma and got MS at the age of seventeen. I'm now wheelchair bound but thankfully for my life. I'm glad that you are a survivor! Live each day being grateful that it is a new day. Discover the pleasure in enjoying nature, music, art. Whatever you like. Take good care of yourself dear! All the best!

[@garlandetheridge9902]

With T2 bladder cancer I am looking down the road and after seeing all the options, I agree with you and will opt for the same procedure eventually. Your vid is very helpful and encouraging. Your brother's description about the procedure is really helpful also. Thank you for sharing.

[@raypritchard6650]

I am just 3 weeks post surgery so I am at the very early stage of living with ALF, my alien life form, so named by my grandchildren. So far things are looking good. I am not embarrassed by it in fact when people ask about I am more than willing to talk about. I am a 66 year old male living in UK.

[@MSDOGS1976]

Good info. I've taken BCG and I'm in the monitoring stage. I have a low grade non invasive kind and hoping I can keep it that way through maintenance treatments and close monitoring. But good to educate myself if I have to go the Ostomy bag route someday. I'm 70 so don't think I would want to fool with neobladder. Sounds like the learning curve would be a little too long for my liking.

[@barbarawolcott6999]

Margo, I understand! I just had a permanent colostomy. I had a illeostomy for three months 17 yrs ago. Now going through exams for cancer again. First test looks as if I don’t have anal cancer again. However, I have one more test to go through with all the prep a second time. I certainly understand the love hate!! I’ve only had this colostomy six weeks!

[@Aveena1607]

Personal financial status is an important factor.

[@javamanV3]

I have high grade T1 bladder cancer - I just read that bladder cancer is the most expensive kind of cancer to get.

[@sarah-kk4om]

I hated my stoma. I got the pouch but it’s worse than a stoma. It’s a complete nightmare so I’m going back to a stoma and I can’t wait. Never thought I’d want a stoma back

[@constancelupo4752]

How can I purchase the Ostomy cylinder and bags? Thanks

[@candiwilliams53]

Though you're insurance company.

[@mtgirrl]

E-bay has alot of stuff if you know what you need

[@J.G.817]

Try Byram Ostomy supply's.

[@bobs1356]

I don't blame you. I have people who have the bowel bags and show on video, for people who have to have it done. I suppose it helps but I am like u I couldn't show media my personal problem.

[@MikeBrown-dk7or]

It is useful to show this personal problem when it can help others.

[@DelmerReed]

The bags constantly leak

[@MikeBrown-dk7or]

Once I learned to change my bag in the shower myself, I rarely have a leak.

[@JS-tr7oo]

I need answers. My spouse had his bladder removed and prostate and has a Stoma with an ostomy bag. So far he is far too weak to change the bag himself. I have noticed after just 2 days there is so much cloudy tissue stuff covering up his stoma that I can NOT even see the stoma. What is causing this? Is this mucous? Why so much mucous? I get no help at all from the surgeon or nurses. When it gets like this I change the ostomy bag, but within 2 days it is all cloudy with this mucous like stuff.

[@whatisgoingonineedtoknow.]

So sad, never finding and preventing the root cause but only treat, stop symptoms. It's never a solution.