BLADDER CYSTECTOMY AFTER CARE

Hello Cyc2018 and let me offer you a warm welcome to the group, although sorry to hear about your dad. I didn't have a cystectomy as I went a different route, so not much help. Just to let you know someone with experience of this should be along to offer advice. Best wishes.

Hi Cyc2018,Welcome to the group.I had a cystectomy just over 2 yrs ago and have a urostomy.I usually change the bag 2 or 3 times a week.It takes a few minutes each time and becomes routine.Are your dad’s hands badly affected by his cerebral palsy ? If so that might make it difficult for him to manage without help.The plug to empty my stoma bag is small and fiddly.I don’t find the stoma has altered my life too much.I love gardening and am able to do that with the urostomy.In my case the urostomy was life saving so I’m grateful for it.I hope you find this group helpful,there is plenty of support and advice here.Best wishes.Jane

Hi Jane 

Thank you for your reply. My dad has the use of one hand. He probably wouldn't be able to change the bag but that's fine as like I said he lives with us and we can help with that. 

How ofter during the day would the bag need emptying? As this is something we are unsure he could do, so just trying to gauge what sort of care during the day he would need as I work three days a week and have a children who like to do things at weekends sometimes without their Grandad.

If he did not have cerebral palsy the consultants wouldn't be worried about doing the cystectomy so I would like as much info about the best treatment he could have before we see them sometime in the next week.

Many thanks for your help

C

Hi,I usually empty mine every couple of hours as I don’t like it to get too full.At night I plug the day bag into a large night bag which I empty the next morning.I’m sure the others can advise about chemo and radiotherapy.I only had surgery.Best wishes Jane

Hi,If your dad does have a cystectomy he will need to be as fit as possible before surgery.It is a big operation and there can be complications.It often takes months to fully recover but a lot depends on age,existing medical conditions and general fitness.I felt better after 3 months but it was another 5 months before I felt well enough to continue caring for my mother full time.I found it hard to look after her even with extra help.Best wishes Jans

Hi Cyc2018

Welcome to this wonderful forum.

I went straight for the urostomy route as I did not want chemo or other invasive treatments. I have a scan twice a year.

My Stoma (Basil) is fabulously user friendly and my best friend. Basil gets emptied every 2 hours during the day and gets changed every 2 days, you will work out when to empty the bag.

I think this is the best way for your Dad, much kinder and I wish your Dad all the best

Love Inanna x 

Would it be possible to use a night bag during the day too, to reduce the time between emptying?

Hi Teasswill,I don’t really think so as the night bags are so much larger.They would be very visible under clothes.The daily emptying isn’t a problem.Sometimes I leave it longer between emptying.The stoma is easier than before I had cancer.In the weeks before the cystectomy I was either going every few minutes or not able to pass urine at all for hours.Love Jane

Thank you all for the info its been a great help. Using a night bag during the day whilst dad is st home alone sounds doable, as we would only use that when dad's left for longer periods alone so being more visible would be a problem. We have first oncology appt tomorrow to discuss options. If everything also helps with the amount of going to the toilet that would be a godsend as he's so tired from waking all the time for a pee.  He has had two GA'S over the last three years so I'm hoping that's in our favour. 

Thanks for all your info 

Good luck with the appointment.It might be helpful to write down any questions beforehand as it’s easy to forget.Ask for copies of hospital letters.I used to write a short note of who I had seen and what was discussed at the top of each letter.If your dad does end up having a cystectomy there will be various appointments before the surgery.I was lucky as the hospital arranged for me to meet an anaesthetist and pharmacist at the pre op assessment.I live over 40 miles away from Bristol where I had the op so it saved another trip.The night bag is a real bonus.Before the surgery I was up every few minutes all night and it was miserable.Best wishes Jane