What can I expect when I get home?
It can take 8-12 weeks to completely recover after your bladder is removed. It is common to have concerns or experience a complication after surgery.
Typical recovery timeline
Typically, recovery from cystectomy takes several months. Your experience may be different. Always follow your doctor’s recommendations, which may be different from what we describe.
2-4 weeks after surgery:
Incision gradually heals
Likely to have a post-operative check up with removal of stents / staples
Restricted lifting
Gradually resume light exercise
Appetite slowly returns to normal
It is common to have:
Discomfort in abdomen, testicles, or perineum (the space between the scrotum/vagina and rectum)
Drainage from urethra or vagina
Constipation, diarrhea, or bloating
After one month:
You may be able to increase your physical activity
Gradual return to work, depending on the physical demands of your job
Travel is usually OK
After 3-6 months:
Slow return to pre-surgical activity
You still may not "feel like yourself"
Some fatigue is still common
Discomfort in the scrotum can last up to 6 months
Caring for your urostomy
Learning how to take care of your urostomy takes practice. This video shows step-by-step instructions on changing the urostomy bag.
Regular bag changes and exposure to urine can cause skin irritation around your stoma (opening in the belly), making it red. This is a common issue for people new to having a urostomy.
*A stoma is an opening in the abdomen to divert bodily waste, such as stool or urine, from its normal path, created through surgery.
Skin Care
To manage skin irritation:
Check your skin each time you change the pouch. Use a mirror if necessary.
Measure the stoma and cut the barrier to fit the stoma.
Do not wear the skin barrier for too long. Recommended wear time is 3-5 days, depending on your activity level, sweating, and how often you empty the pouch.
If your skin is irritated or wet, apply skin barrier powder. Gently brush off extra powder, and consider using skin sealant or skin prep before applying the pouch.
If urine seeps under a specific area or by a skinfold, use skin barrier paste to fill gaps.
Measure the stoma during each pouch change for the first 3 months after your operation. The stoma's shape and size will change as your body heals.
Don’t wait to ask for help! One visit with a stoma nurse can save you from a lot of trial and error.
Preventing Leaks
Leaking is a common worry for patients after bladder removal. This video has tips for preventing leaks with all three types of urinary diversions.
To prevent urine leaks at night:
If you have an ileal conduit (urostomy), make sure your urostomy appliance is properly attached to the skin, empty your bag before bedtime, and consider using a larger night bag that can hold more urine while you sleep.
If you have a neobladder or catheterizable pouch, setting an alarm at night can interrupt your sleep, but it can help reduce anxiety about leaks and cleanup.
If you have a catheterizable pouch, consider inserting a catheter overnight so urine will drain into an external collection bag while you sleep.
Urostomy Supplies
Most likely, you were sent home with sample and vendor information for urostomy supplies. You can request additional supplies through the vendor or your doctor’s office. An ostomy nurse can help you if the supplies you have are not working for you.
Supplies to have handy every time you change your urostomy appliance:
Gauze
Sting-free adhesive removal pad
Washcloths
A skin prep pad
Adhesive solution
Stoma template and scissors
A new skin barrier
A new urostomy pouch or bag
You may also want:
A hand-held mirror (or to stand in front of a mirror)
A clean bath towel to cover your lap and clothes
A clean hand towel for wiping the skin or discarding the old device
A tampon or gauze to help wick up urine while you are changing the barrier and pouch
Dry the skin well and warm the ring flange so it forms a better seal on your skin