Having my bladder taken out
Help!
women who have had their bladders out after prior treatment. tell me what it is like to have a bag on the outside and dealing with recovery maintenance, and just living. I know it is the best, but I am still scared and being by myself, the ability to take care of this. Have any words of wisdom? After 4 years of this I am tired of pads, Keytruda, Drs. appt and always worrying about incontinence.
@Barb24 - I am not exactly the person you are seeking as I had my bladder out after only 2 TURBTs and 2 instillations of Mitomycin. I chose to forgo other treatment and get on with my life without my diseased organ. I had RC/IC just over a month after my diagnosis and have never looked back. I was 63 ( almost 8 years ago) and in pretty good health and physical condition. You can live a great life with a bag as many of us do. I personally feel that going into it with the attitude that this will get your life back and things will work out makes a difference. I also feel that the thought of the surgery is much worse in our minds than I felt it actually was. I was home in 5 days and doing well in a month. I would be happy to discuss any questions you have and also have a tip sheet that I provide that has been compiled from those who have had RC/IC. Being frightened is normal. I live alone and did just fine. A suggestion is to get a couple samples bags from your urologist if possible and "try" them on to see how you feel. Message me if I can help further. My best Linda Urbanski ( moderator, Bladdercancer.net team member)
for me, it was straight to bladder removal without any other treatment due to it being late stage. From those I speak to, the basics of bladder removal and the urinary diversion experience are the same. I have a urostomy bag. It takes some time to get used it but you will be surprised how soon it is just becomes part of your routine. you need to take things easy at first. After that, it shouldn't stop you doing anything you did before. If you have any specific questions, please just ask. Laura, Moderator, BladderCancer.net Thank you for your help. my surgery is next month, and I will contact you again after
the surgery, but yes, I am scared, nervous and overall tired of all these challenges.that’s good you have a date for surgery. Feelings like scared and nervous are perfectly normal. In fact it’s your body’s way of processing what is happening and finding a channel to deal with it. As humans, it is natural to fear the unknown. You have definitely got this 🙌🏼 Please let us know how you go and as any questions you want and we will try to help. You may find this featured collection on a women’s perspective useful https://bladdercancer.net/a-womans-perspective And also this one on urinary diversion. https://bladdercancer.net/living-with-a-urinary-diversion keep hold of the life after surgery. You can do this. Here to help anyway I can. Wishing you well. Laura, Moderator, BladderCancer.net @Barb24 - Good to hear that you have the surgery scheduled soon. I know that it is stressful and scary but there are so many of us who have been through this and are doing just fine. Take a breath and try not to let your mind go all over the place. While I know that is easier said than done, your surgery will be done and over before you know it. Please keep us posted on how you are doing. Feel free to message me if you think it would be beneficial. I am always available for support. My best Linda Urbanski ( moderator, bladdercancer.net team member)
