Does feeling of urgency go away after bladder removal?

Hi SaraLucy,Welcome to the group.I had I.C from my early 20’s until I got bladder cancer and had bladder removal aged 58.For me the pain,urgency and frequency have gone and it’s been much easier having a stoma.No more having to find a loo in a hurry.You don’t get the feeling that you need to urinate and it’s easy to empty the bag when you are out.I hope this helps.Love Jane 

Hi Winkers60. Thank you so much for your reply! I was so confused about if I’ll still feel the need to urinate or not and your answer was such a relief to my concern. So, is it that you literally forget how it feels like needing to pee???That’s really what I want. 

Dear Jane, I have another question if you don’t mind. Have you got the radical cystectomy or simple cystectomy? For me, it’ll be a simple cystectomy and I’m wondering if it might be different the way you feel after a simple cystectomy compared to when you had a radical. Thank you in advance!

Hi Sara,I had a radical cystectomy as I had an aggressive type of bladder cancer.I’m confused that you can have bladder removal without having the uterus etc removed.Is It a partial cystectomy you are having ? I haven’t had any problems adjusting to the urostomy.It was life saving surgery due to the cancer.It’s so good to be free of all the pain and other symptoms of I.C.Hopefully you will find the op will transform your life.Is your sleep very disrupted ? When I had I.C I was up a lot each night but now I sleep through.The bag plugs into a larger night bag which you empty the next morning.Love Jane 

Yes I’m suffering from chronic sleep deprivation due to my bladder. I take Xanax every night but still don’t get more than an hour of sleep. I had to quit my job because of this

since I don’t have cancer, it is possible to only remove the bladder and not the structures. They call it “simple cystectomy”. I’m worried about that the feeling of urgency remains even after the surgery as it’s not a radical. 

I’m glad that you had your normal life back after your surgery. I’m in the last stage and should either remove my bladder or end my life :( can’t suffer anymore.. 

I’m so sorry your quality of life has been so badly affected.I know how miserable I.C is especially once it gets so severe.I don’t think they would be suggesting cystectomy if they didn’t feel it would help you.I don’t see either how it will make any difference if you are having a simple cystectomy or radical.The bladder will be gone and your symptoms should be gone too.Love Jane 

Thank you Jane. I appreciate the time you spend answering to my questions. As my last question, I’m wondering how it’ll affect my bowl movement as they take part of my intestine to create the illeal conduit. Has it affected your bowl negatively? Thank you!

I got paralytic ileus after the cystectomy when the bowel goes to sleep and doesn’t work properly.It’s quite a common complication.It took 6 months for my bowels to recover fully.I got a lot of constipation but others get diarrhoea following surgery.I haven’t found the surgery has affected my bowels badly it was just following the complication that they were a bit unsettled.

Hi SaraLucy 

i have had my bladder removed in a different type of surgery but would agree with Jane that the fact of it being a radical or simple cystectomy should make no difference in terms of the feeling of urgency being removed.

Without a bladder you no longer have anywhere to store urine, so there is no sensation of needing to pee at all. As there is nowhere for urine to be stored, the urine will go through the stoma and into the bag, but you don’t actually feel the urge to pee. It is an ongoing process of the urine automatically leaving your body and going into the bag over which you have no control. 

This means no more trips to the bathroom in the night, so your sleep should improve. Given the way your life is at the moment, having your bladder removed should transform it for the better. I can’t comment on any bowel issues as I had my bowel removed at the same time and have a permanent colostomy now. I hope you can take heart from those of us who have had their bladder removed and been able to get on with a normal life.

Sarah xx