Home After Radical Cystectomy: How to Prepare

Last updated: January 2021

So you've had your radical cystectomy and are on your way back home. What can you do to prepare for this momentous homecoming? There are in fact a lot of things that you can do to get ready for this prior to going into the hospital.

Preparing for the car ride home

Firstly, for the journey home have some warm, loose, comfortable clothing, as you will have just spent the last week or so in a warm/hot hospital environment, and so you will feel the cold on going outside.

Secondly, I would take a pillow to sit on as this helps to absorb the "bumps" on the journey home, and lastly a towel that can be folded and put between you and the seat belt. There are stoma protectors that fit on your seat belt for sale on various websites. But personally, for me, a towel was more than adequate. This will help protect your stoma from the pressure of the seatbelt and make the drive back home more comfortable.

Mattress protectors and extra bedding for leaks

Back home I had bought the following items: 2 mattress protectors— unfortunately, you do need to be prepared for the odd leak in the first few weeks as your tummy changes shape and your beautiful stoma takes on its new shape and size. I also made sure I had an extra couple of bedding sets available. I also got some waterproof bed pads about 1 meter squared to put underneath me to protect the bedding whilst changing my pouch, as your stoma will have a mind of its own and is guaranteed to pee at some point whilst changing.

Making bag changes easier

In readiness for the little darling peeing whilst changing, have some dry wipes or get some good quality kitchen roll that you can fold into squares and put over your stoma whilst changing. Toilet paper is of no use as it just breaks down very quickly. Or you can get a number of face flannels, which again can be folded and used to put over stoma whilst changing. You can then recycle these, just remember to put them on a 60 degree Celsius wash to kill any germs or soak in a bleach or disinfectant and use a lower temperature wash if you prefer.

Using an overnight drainage bag

Next I got a washing up bowl to fit my night stand into. This will save any leaks going onto your floor if you forget to put the valve on your night bag into a closed position after rinsing, and I'm sorry to inform you, you will probably forget at some point. It happens to the best of us.

In preparation for the cleaning of your night bag there are a number of different things you can use. Some folks use vinegar and water, I myself use Milton sterilizing liquid or something similar that is generally used for sterilizing babies bottles. Next on my list was some Tena incontinence pads, as you will most likely have had a number of lymph nodes removed and the lymphatic fluid will now have to find a different route within the body. Nobody told me about this and I was absolutely terrified when I started to loose blood stained fluid. This is perfectly normal and will ease off over time and eventually stop, as the lymphatic fluid finds it new route around the body. However some ostomates do suffer with a light discharge for some time afterwards but find that ordinary panty liners suffice.

Diet and distractions during your recovery

Food wise, initially you probably won't have much of an appetite and will have been put on a quite bland diet. Cheese, cream, fish, white bread, clear soups, low fibre meals are the norm at the start. However you will be given a diet sheet with what is recommended before you are discharged from the hospital.

Lastly, get stocked up on some good old comedy films, they will help to while away the hours as your recovery starts and there is nothing better than a good old chuckle to brighten you up. As they say "laughter is the best medicine".

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