Cystectomy operation date

Hi . Good to know you now have a fixed date. I have no experience of this, so can't help. Just sending you my best wishes and hope all goes well or you. I am sure others will be along with advice. Best wishes.

Hi Woody

I will be rooting for you on 30 January.  Fear of the unknown is the worst. I hope you can talk about this to your CSN.  The Macmillan Nurses and this forum are here for you

Love Inanna

Hi Woodyl

Firstly, let me reassure you that despite this being a big operation, many of us have got through it and are living a full, albeit slightly modified life after recovery.

You haven't said if you've opted for a conduit/stoma/pouch or neobladder reconstruction so let us know and we can advise you further. 

I recommend that you find a local bladder cancer support group near you, details at https://www.macmillan.org.uk/in-your-area/choose-location.html where you'll be able to chat to patients who have already been through what you face. If you can't find a group near you, I can put you in touch with my group for a chat on the phone. Or you can chat to me.

You need to be as fit as you can be before the op so you have 10 days to get very active, walk miles every day if you can, lay off alcohol, caffeine and sugar. Eat lots of protein, fresh fruit and salad.

I've cobbled together some information about stoma life if that's what you're having that I'll be happy to send you if that's your choice. 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 to 7 hours dependent on what type of reconstruction and is a battering for the body even if done robotically. I was very apprehensive just as you are and decided to go for it as I'd been given only a year to live. 

A few days before the op, you'll likely have to scrub with a disinfecting shower soap to sanitize your skin and lay off carbohydrates and root vegetables so your bowel clears. On the day of the op, you'll have a canula put in your arm, put on a gown and paper pants (they don't go on your head, do they Rily?) and wear some fetching green stockings to prevent clots in your legs. You'll most likely have a spinal injection then off to sleep.

When you wake up after the op you will feel drowsy and elated due to the drugs. You'll have drips and drains in your arms and body, possibly your neck too. You will feel uncomfortable, tired and sore. Take all the drugs they give you for pain relief. Ask for more if you need, do not suffer in silence!

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. It can be a bit feast and famine on the loo to begin with but will settle down to a new normal.

You won't feel like doing anything for a couple of weeks/months. 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 and carbohydrate stuff is good as it aids recovery. Do not attempt to lift anything heavier than a kettle for at least six weeks.

That's enough to take in for now. More later when you tell us what procedure you're having.

Since my operation, I have renovated a 3 bed house, restored a classic river cruiser and been on holiday abroad as often as I used to go never mind do all the daily tasks that life presents.

CB

Crusty as always, gives a good account. I had my op 8 years ago age 57 & although recovery seemed endless at the time, it now seems a short episode in history. Most people underestimate just how weak & tired you will feel post op. Gradually you will regain strength & energy, but it will be months overall. It's important to build up walking day by day (even if it's a slow shuffle not quite standing up straight). Two short walks are better than one long one. Plenty of rests - nap during the day. Appetite may be poor - try to have a little something every couple of hours in between light meals. Concentrate on protein & carbs, but really anything you fancy.

Yes, it will take a bit of getting used to your new plumbing but otherwise life will go on pretty much as before. When I was post op in hospital I felt I was still 'me', just feeling immensely tired & woozy. Emotions can be up & down over some months as well, so anyone looking after you at home needs to be prepared!

Hi crusty bladder thank you so much for your in depth reply I am sure it will help . I have opted for a stoma a neo bladder seemed like it could have been more complicated what did you have 

Hi Woodyl

I have a stoma too, it seemed like the simplest solution at the time and I'm very happy with it. That said, this decision is a very personal one and others with neobladders are very happy too.

Once it settles down, your stoma will most likely 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 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 over a few weeks. You should receive a shoulder bag with pouches, adhesive remover spray, wipes and disposal bags in it. It takes a few weeks to find the best pouch for you. I use adaptor rings as the ring creates a better seal around my stoma and stops the skin from getting soggy and irritated. I use Pelican platinum convex vitamin E pouches with Hollister adaptor rings. Once your stoma has settled down you can have the pouches laser cut to stoma diameter size. 

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 essentials in a back pack or a small leather ipad bag (Amazon, £20). 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 use a drain bag 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 waterproof covers on the mattress under the top sheet, a bit sticky but got used to it now.

I usually change my stoma bag daily and always after two days. My failures have all occurred on the second night while on my left side when I’ve not done a daily change. The weight of the night bag 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.

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! Then she stuck her finger up my stoma and didn’t even offer to buy me lunch afterwards 

I use disabled loos 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 (actually, I told the second bloke I had mild Tourettes so when he asked what that was I told him to eff off!)

You can order free samples of a fake stoma, pouches with taps or bungs, adaptor rings and adhesive removal spray from the suppliers either online or by phone. Suggest you contact Pelican Healthcare, Hollister, Coloplast and Clinimed if you want to practise before you have your op.

Avoid soap and shower gels with moisturiser as this impedes adhesion. I use the Simple shower gel range. Being hairy I also shave VERY 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 should 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.

I think that’s enough info for now. Ask me anything you like, if I don't have the answer someone else here will.

CB

Hi woodyl ,  I chose neo and it's  almost a year since my op and life will change but I always think how lucky I am I had a chance to get rid of this horrible disease.

As always CB has given you brilliant advice for the stoma and he's definitely the expert to ask if you need any questions before or after. 

Both CB and Teasswill gave me lots of advice , answered questions before and after my op.

I wish you well for your op and just expect s slow recovery , frustrating at times but you will get there in the end.