Bladder removal

Hi,

Having been diagnosed with Bladder & Prostate cancer right at the start of the pandemic  I have fortunately had great treatment and care throughout, Weeks of Chemo followed by removal of Bladder and Prostate.. Stoma since August and with great support from the Stoma nurses have got reasonable control of managing it all now. It takes time to get the hang of it but is simple when you have and then is just finding the right system for you. The Nurses help greatly here.

Hello Strummer33

It takes a few weeks to get used to it and occasionally I do curse it but without the stoma I would not be here to tell the tale. I've had my stoma and bag for nearly four years now. Having a bag and changing it is the same now as putting on shoes, it's just part of my daily routine. The bag sits under my normal clothes, is not noticeable and has not really restricted what I do except lifting heavy weights over 20kg - Mrs CB has to hump the bags of compost now but she is a bit of a farm girl used to flinging hay bales about.

I've collated some notes about stoma life that I'll be happy to share with you if you wish.

CB

Hi Strummer33

Here's my notes on stoma life:

The stoma - your stoma will be 25mm to 35mm in diameter, pink, wet, look wrinkled and ooze mucus which is normal. This makes your wee look cloudy but that's ok. The stoma pulses, it is the maddest thing to watch but then it's made of bowel so that's to be expected. 

The bag/pouch - the stoma nurses will train you how to manage and change the bag. It's a doddle after a few changes and you will develop your routine. You will get a shoulder bag with pouches, adhesive remover spray, wipes and disposal bags in it. It takes a few weeks to find the best bag for you. I use adaptor rings too as the ring (like sticky toffee) creates a better seal around my stoma and stops the skin from getting soggy and irritated. I use Pelican platinum convex pouches with Hollister adaptor rings. Once your stoma has settled down you can have the bags laser cut to stoma diameter size to save you having to do it yourself. All the kit you will need is available free on repeat prescription.

Leaks - are rare but inevitable. When I go out away from home I take spare boxers, trousers and my shoulder bag with all the kit in it and leave it in the car boot. Otherwise I take the basic essentials in an ipad shoulder bag. You need to empty the pouch frequently. I monitor mine by patting it gently. Keep an empty drinks bottle in the car for emergencies or you may end up like me, standing in the central reservation of the M4 in a jam, splashing my shoes!

Nights - I plug in a drain bag to save having to get up to empty the pouch. I use them for two nights only as they get a bit smelly if used for longer. I do wake up several times a night and check it's stuck properly. I have the drain bag on a 'display' stand stood in a square washing up bowl to protect the floor, and in the early days I had a waterproof cover on the mattress under the top sheet, a bit sticky but got used to it though don't use it now. 

Usually, I change my bag daily and always and always after two days. My pouch failures have all occurred on the second day or on the second night while on my left side when I’ve not done a daily change. The weight of the tube pulling on the pouch seems to cause the adhesive to give way. Overall, I sleep in phases but have got used to it now. Dry nights are the norm, wet ones are rare.

Your stoma is most likely secured with tiny staples and should be ok to roll around in bed but I've never laid flat on my stomach. I have a couple of staples working out around the peristomal skin area, my stoma nurse tried to pull one out with pliers but I went with it and we landed in a heap!

Radical cystectomy - video information. If your recommended treatment is having a radical cystectomy with either conduit/stoma or neobladder reconstruction, the Royal Berkshire Urology team and bladder cancer patients have recorded seven short videos that explain the procedure, options and life after surgery. You can see the videos here:https://www.youtube.com/channel/UCQhfuljB7v0w6tcv-BxxGuQ/videos?sort=da&flow=grid&view=0

Take a deep breath then watch Alison changing her bag on Youtube: https://m.youtube.com/watch?v=3UqA2dC5aU4

The bag doesn't show under your clothes so nobody knows. I wee faster now than any other bloke in the gents which has provoked curious comment. I tell them it's a gift! I go in disabled loos too as they are usually cleaner unless shared as baby changing units. You'll be getting a free RADAR/NKS key for the special locks on many of the doors. I've been challenged by two people waiting to get in, when they accused me of not being disabled, I told them that only 8% of disabled folk use a wheelchair and that not all disabilities are visible and walk off.

You can order free samples of fake stoma, pouches, adaptor rings and adhesive removal spray from the suppliers either online or by phone. Suggest you contact Pelican Healthcare, Hollister, Coloplast and Clinimed. I used the fake stoma to get used to the idea before surgery so it was less of a faff after the op.

Avoid soap and shower gels with moisturiser as this impedes adhesion. I use the Simple shower gel range. Being hairy I also shave carefully around my stoma with a beard trimmer (guard off and round tipped blades) rather than a razor as it doesn’t irritate the skin.

You will be measured for a lycra belt some time after your op and they are free to us 'baggies' or stomates. I wear mine when doing any heavy manual work to avoid herniating my stoma. Some pouches have plastic loops so a support belt can be worn with them. I find that boxers elastic does the job.

Hope this helps a bit.

CB

Hi Strummer, I made the decision to have my bladder removed and go for a stoma bag, its the right decision for me. I am the most cack-handed person in the world and felt like I would never get the hang of it but I did and Basil is wonderful. Had my op in March of this year,  feel like Basil has been with me for a long time, go for it

Thank you for your reply 

Thank you for your reply 

Hi CB , thank you for your great information, I found it very supportive,I have decided to go ahead with the op , my Gran wore a bag I remember the smell but it’s clear that things have come along way since the 70; s, due to Covid things are on hold so I am concerned on how long I have to wait , take care , strummer 33