It’s back

Hi Tizz101 . Sorry to hear of your recurrence. Not the news you hoped for. Many here have had bladder removal if it comes to that and will be able to reassure you and answer any questions you have. Best wishes.

Hi Tizz101,

I wrote something in reply to someone else recently about what it was like for my removal and stoma. Don't know if it is possible to search on that if not, I can write it again though others may beat me to it.

Long story short - diagnosis was a bit of a shock but like you I wanted it all out asap. Went straight to neoadjuvant (just means chemo before the op) Gem/Cis chemo (4 cycles - 2 week on 1 off)) then bladder removal and, once home, managed to get on with life. Now nearly 2 .5 years living with the stoma and often forget I have one.

All the best

Latestart

Hi Tizz101,I’m so sorry it’s back.
If you can get as fit as possible beforehand that will help.Prior to surgery you will get to meet your surgeon  and have pre op tests.It is helpful to take someone with you and write down any questions you may have.At my pre op I met the pharmacist,anaesthetist and nurses.I was weighed,measured had bloods taken and given the special drinks you take before surgery.You will meet your stoma nurses.Some people have fitness tests on exercise bikes but I didn’t perhaps because I was weak and had the surgery as an urgent case.I had a mixture of robotic and general surgery.The robotic surgery will leave a few small scars.It is usual to spend time in intensive care or high dependency straight after the op,This is because it is major surgery,Once your observations are stable enough you will be moved onto a ward.I was in intensive care for around 14 hours some are in longer.
Pain wise you will be given strong pain relief.I wasn’t in as much pain as I expected and apart from the first day or two on morphine managed just with IV paracetamol,They will probably give you IV fluids and strong antibiotics as well to start with.
If you can get shuffling around as soon as you are able that will help to get the bowels moving.I had to be able to change the stoma bag unaided before I was allowed home but managed ok.Hopefully you will have good stoma nurses to help and encourage you.
The thing to remember regarding the stoma is that in the early days post op it will shrink down so you will need to keep an eye on its size.You can either use the paper template that comes with the stoma supplies or use the plastic back you peel off the back of the bag.By measuring it you can ensure the hole in the bag is cut to fit well over the stoma preventing leaks.Once the stoma settles to its size you can order pre cut bags if you prefer.I’m sure you will adjust quickly to having one most of us on here have.
Once you are home it’s best to have someone around to help out for the first few days at least.My sister took a few days off work to bring me drinks,food and be on hand if needed.Eating little but often is best.Rest when you need to rest and build up walking distances gradually.Recovery varies it is usually a few months before you feel completely well.I noticed a big improvement by the end of week 12 and the start of the 4th month.I hope this gives you some idea what to expect.The surgery was not as bad as I imagined.The recovery I did find tough but being alone in the pandemic was the main reason.I’m sure like I did you will receive a lot of support and encouragement from this group.Jane x

Thanks so much for that info.  I think the care of the bag scares me most

So far not being offered chemo beforehand 

If they think it is still stage 1, often chemo beforehand isn't suggested. Depending on post op path report, eg if cells found in muscle or lymph nodes, they may suggest chemo afterwards. 

Winkers has given you a good account of what to expect. Recovery is slow, but gradually you will find you can do more. Try to build up walking a little more each day, with plenty of rest in between, but don't push yourself too hard or you will pay for it the next day.

Appetite may be poor at first. Eating little & often is best, even if just a few spoonfuls every couple of hours. Anything you fancy is OK but concentrate on protein & carbs (eg add cream to mashed potato). I used to carry around snacks like biscuits to have a nibble, small scones from the freezer, & tinned custard in the fridge to have small servings. I also used to add a bit of Complan to weak gravy as a savoury drink. Hope you get a date soon & that all goes well for you.

It’s easy once you are taught what to do.It becomes routine like cleaning teeth and it doesn’t take long to change the bag.At night your bag will plug into a much larger night bag.It is good to be able to sleep through the night without having to empty the bag.You should still be able to turn over at night as the tube is long.We will be on hand to answer any questions or worries you may have.It sounds more daunting than it actually is,I found it much easier to manage the stoma at home than in hospital.In hospital you have  drip stands and tubes and once those are gone it’s much better.You will probably watch a video about the stoma and be given a practice kit beforehand .I didn’t use the kit but some people find them helpful.Jane x

I remember my sister returning from the supermarket with various snacks for me to try.Eating little but often really helped to get back to larger portions.I introduced my old diet gradually once the bowels were working better and had recovered from the surgery.I was nil by mouth for so many days it was hard to eat.Jane

It sounds hard but really it is very straightforward. I don't know if you have had a child, but cleaning the area around the stoma with dry wipes and lukewarm water reminded me of changing my daughter's nappies 40 years ago, except then we used cotton wool and water.

Emptying the bag is easy too - they have a little cork or a sliding tap to let the urine out (different makers have different systems) - and standing up to urinate means it doesn't take long. You don't have a signal to empty them like we did when we had our own bladder but you get used to noticing when they are filling up.

The stoma brings the urine produced by your kidneys up to the stomach surface and it flows gently down into the bag that is stuck around the stoma. I change the bag every other day, though others do it daily or even every 3 days. Again the stoma nurses will advise you on that.

The hospital told me about special underwear with a pocket to hold the bag as it fills which I find very useful - especially now M&S sell their own brand of these. But others don't use anything different to what they always used.

The stoma nurses will teach you all about it before you leave hospital and afterwards one will visit you at home to make sure things are going OK (and you can ring them whenever you need to).

I talked to the nurses before the operation and they gave me some bags to try and also checked if I was allergic to the adhesive that sticks the bag to your skin (it's all part of the bag you get, so dead easy, I promise. (I'm allergic to lots of things like perfume so have to use certain bags but that's easily sorted out.)

Getting hold of the bags, and the various sprays, wipes, waste bags etc that you need is easy - the stoma nurses will sign you up with a delivery company and all you have to do is order replacements. You will come home with supplies enough to last some time too. And the night bag that plugs into your day bag means you can sleep and don't have to get up to visit the lavatory in the middle of the night!

I have given you a rundown of things related to the bag and hope it puts your mind at rest. if you take it slowly you can see there's nothing that can't be managed. 

All the best,

Latestart

Hi Tizz.

I can't really add to what's already been said , it's all excellent advice. Iam 13 weeks post op and iam going back to work on Monday all be it reduced hours until I bed back In. It's a lifestyle change there is no doubt about that but iam getting used to it evey day and you will to.  There was one thing I did in hospital which I think helped me most. I never lay in bed until night when I was going to sleep. I sat in the chair all day getting up every while for a walk which is quite frequent to empty the stoma bag and out of the ward to the hospital shop. Try and keep as active as possible in the hospital. 

You'll breeze this I know you will 

Best wishes 

Mark