Bladder cancer

mlswindle
mlswindle Member Posts: 3 Member
edited June 2022 in Bladder Cancer #1

Had bladder and prostate removed 2/23/22. Opted for the ostomy bag. Physically I'm feeling pretty good and getting back to "normal ". Mentally I'm struggling with this new appendage to my body and realizing this is going to be with me for the rest of my life. I have always been healthy and was not prepared for this. I've had trouble even looking at myself in the mirror and don't even talk about intimacy!. Would like to hear from others on how they coped with this life changing experience. Thanks in advance.

Comments

  • barehead
    barehead Member Posts: 31 Member

    Had my RC/IC in July, 2020. Was active and pretty healthy prior to that.

    I try to look at it as "these are the cards that we were dealt". We can look forward or we can dwell in the past.

    I have given my stoma a name. I call it Nipsy. If it wasn't there, I probably would not be able to write this post, since I would not be around. It is a price I had to pay to continue to be with my wife, and watch our adults kids and our grandchildren grow.

    Once when we were at the beach or in the pool, my bag decided to show itself and one of my grandkids asked about it. I simply told him that my bladder was diseased and had to be removed, and now I stored my urine in this bag. Case closed.

    Every person has to come to terms with their new normal. If you are having difficulty doing so, you are not alone. You may want to contact a post treatment support group at the institution where you were treated. We went through a traumatic experience, and can use some help dealing with the toll it has taken. I have availed myself of these resources, and am much better for it.

    Also, if you wish to reach out and message me, please feel free to do so. I have mentored/am mentoring several folks whom have gone through our shared experience. There is a strong bond among many cancer survivors whom try to ease the path into the club to which no one wants to belong.

  • mlswindle
    mlswindle Member Posts: 3 Member

    Thank you so much for the response. I know I have some work ahead of me and your comments have helped.

  • Eula
    Eula Member Posts: 5 Member

    I so don't want a bag. Is it ok? Do you feel like your life is ok? I wa thinkng of the nuro bladder. But I am scared and confued.


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  • mlswindle
    mlswindle Member Posts: 3 Member

    I opted for the bag as I didn't want to have to worry about using a catheter each time to empty the bag. Seems more prone to infections using the catheter. The bag is a big adjustment and I have not totally accepted it. I have been fortunate that so far I haven't had any problems with it. I purchased two stealth belts which allows me to go swimming and di work out in the yard. The belt protects the bag and hides which makes me feel like I'm not wearing a bag. This has made a big difference. Good luck in your journey.

  • Eula
    Eula Member Posts: 5 Member

    I think I am opting for a neobladder reconstruction, Thanks for the kind word.