Radical cystectomy

Hi winkers60 . Now the decision is made, you have to look forward. I am sure you will get support and advice here from those who have been through this. wishing you well. Best wishes.

Thanks rily,I am keeping positive.Jane

Hello Jane

It's a scary time at this point so please be assured that life afterwards will continue much as now albeit a 'new' normal. My pre-op advice is to get as fit as you can, eat well, lots of protein, avoid alcohol.

I've cobbled together some more information about stoma life, I hope it helps you prepare for the new plumbing. If you haven't already, I recommend that you watch the series of short videos about having a cystectomy made by surgeons, nursing staff and real patients. nothing gory, just the facts: 

https://www.youtube.com/channel/UCQhfuljB7v0w6tcv-BxxGuQ/videos?sort=da&flow=grid&view=0

Surgery - this is two major ops in one taking 5 hours or so and is a battering for the body even if done robotically. When you wake up after the op you will feel drowsy and elated due to the drugs. You will feel uncomfortable, tired and sore. Take all the drugs they give you for pain relief. Most patients get lucky and have no complications. The physio-terrorists will have you out of bed on day 2 and walking soon after that. Walking helps the bowel get moving again. Pray for wind, it's a sign that the bowel is ok! You'll be on a sloppy diet so as not to stress your digestive system.

You won't feel like doing anything for a couple of weeks and I hope you have someone at home to support you. To be candid, you should expect to feel weak and awful for up to six months but then suddenly you will feel better. Eat plenty of nutritious foods, high protein stuff is good as it aids recovery. Do not attempt to lift anything heavier than a kettle for at least six weeks.

The stoma - your stoma will most likely be to the right of and slightly lower than your navel. It 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 creates a better seal around my stoma and stops the skin from getting soggy and irritated. I use Pelican platinum convex pouches with vitamin E. Once your stoma has settled down you can have the bags laser cut to stoma diameter size. 

Leaks - are rare but inevitable. When I go out away from home I take spare undies, trousers and my shoulder bag with all the kit in it and leave it in the car boot. Otherwise I take the essentials in a back pack. 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 your shoes!

At night, I put the drain bag on its stand in a square washing up bowl. The bed has a waterproof cover on the mattress. The drain tube can pull the pouch off so be aware of that and don't crouch with a full pouch or you will get soggy feet. I sleep on the right side of the bed as my stoma is on the right. The drain bag is plugged in to my pouch and sits on the floor by the side of the bed. I tend to sleep on my right side and my back. The tube is just long enough to sleep on my left side so long as I'm near the edge of the bed.

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!

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 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. If they ask what's wrong with me I tell them I have Tourettes then tell them to bugger off!

You can order free samples of a fake stoma, pouches, adaptor rings and adhesive removal spray from the suppliers either online or by phone. I did and it got me used to a bag before the op. Suggest you contact Pelican Healthcare, Hollister, Coloplast and Clinimed. Have a go at sticking a bag on your tum then release it with the spray and peel off. Wear one for a day and night. 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.

That's a lot to take in and doubtless very daunting. If you'd like to speak to a real bladder cancer stoma patient I'd be happy to chat to you or if you prefer, I can put you in touch with my friend Barbara from the Reading Bladder Cancer Support Group. The Macmillan website has a support group search facility if you would like to find one near you.

Ask any questions you like, we aren't bashful here. 

CB

Thanks so much for this helpful information Crustybladder.I've already looked at videos about the cystectomy itself but it's very helpful to hear about patients experience with living with a stoma.My main concern is my current level of fitness.Normally as sole carer for my mum I am up and down stairs all day, the house is on 4 floors.I started feeling below par at the beginning of the year and was struggling with the usual everyday chores and to manage the garden.Mum went into hospital in April,then onto rehab and since May she has been stuck in the local care home (or lack of care home as my sister & I call it).I had one cystoscopy and then the Turbt and was diagnosed with bladder cancer on the 3rd July.I had hoped to get mum back home and be looking after her again but I'm just not up to it.Poor mum just wants to come home but she needs someone to be in the house full time and we cannot come up with a solution.I'm trying to do as much gardening as I can,its a long terraced garden so that normally keeps me fit.I just feel so tired,am up at least every hour all night and have been for some months.I won't have much time to get fit before the op as it could be any day now.Would I need somebody to be with me when I come home after the cystectomy ? A distant cousin has offered to come and stay for a few days to help out.I'm sure I will adjust to life with a stoma.Thanks again.Jane

Although you will feel even more tired & weak immediately post op, eventually you will probably feel much more fit & energetic. You will need someone to help at home at first to do cooking, housework etc. Stock up with small snacks, small meals, easy to prepare foods. You will need to eat little & often but if will be a few days at home before you can do anything much. I was able to do all my personal care (I had neobladder) but nothing more than open the fridge. As strength & energy improve (you need to walk a bit more each day in between lots of rest) you will gradually be able to do more but it was several weeks before I did any  significant household tasks. It will be a matter of months before you are back to doing usual activities - in general allow 1 month for every hour in surgery for full recovery.

Hope all goes well for you.

Hi Jane, my wife had your op, but with other complications , and attended my daughters wedding 3 weeks later . Last one on the dance floor !!

After the op she did need me to help but within 3 days she could change her bag herself as she proudly told me LOL. She managed very well, but did feel tired for some time. I would accept what ever help you can get, for no other reason than you deserve it and it will help your recovery.

Stay positive and best wishes.

Thanks Teasswill,I think I'm below par because I had a streptoccal infection for weeks,plus the cancer has become muscle invasive.

I haven't really got anyone to stay with me at home when I get discharged.My partner John lives nearby but he is disabled with a rare muscular condition.I know he will do whatever he can to help out.I will need to get a cleaner and a gardener just until I recover.I'll find it hard not to be gardening as I love it,it's been a sort of therapy over the 15 years I have cared for my mother.I normally wear trousers,so I presume I will just need to buy looser waisted clothing ? The stocking up of small meals/snacks sounds a very good idea so I will follow your advice.Thank you.Jane 

Thanks Foxbrush.

My husband had been told today that a cystecomy is the way to go for him so will be about the same time as you possibly. Where will you have your op? It is scary but needs must and the sooner it is over the better. So much help on here I'm sure you and he will get through it .

Hi JennyJJ,I'll be having the cystectomy at Southmead Hospital,Bristol.I live about 40 miles away but the local hospital doesn't do this type of major surgery.I don't have a choice as I have a rarer more aggressive form of cancer which is already muscle invasive.The information on here has been very helpful and made me feel less worried about it,although I am still very apprehensive.I'm just waiting for a date which should be soon as the oncologist said it needed doing urgently.My symptoms are mainly obstructive ones,either not being able to pass urine or going every 10/30 minutes.It's seriously affected the quality of my life for the past few months and the pain is terrible.Do you know where your husband will be treated ? My best wishes to you both.Jane