Bladder removal

Thank you. We have booked to go to Maldives at end of March ‘26 for my daughter’s 40th birthday. I’m hoping he can use that as motivation & something to look forward to. He has never experienced any form of serious illness/surgery so it will all be a huge learning curve. Good to hear you are coping well with it. 

Hi pillar 44

It was my daughters 18th in May. We had all booked to go to Turkey but because of my operation I couldn't go (didn't stop the the wife and daughter and family going though lol) my son stayed with me. We are all going end of August.  Yes it will give him motivation and a goal to achieve having a stoma doesn't stop you doing things like holidays,  you even get extra baggage allowance for all the kit you'll need to bring

Wgen I had my operation I kept telling myself it was for a reason it was to get rid of cancer and I remind myself of this daily 

Best wishes 

Mark

Hi. That is great that you are now ready both physically and mentally to go abroad.  I hope Ryanair knows about extra luggage as we are back and forth to Spain to our holiday home.  Is there anything either practically or emotionally that you wish you had known before the op?

Hi Pilar, no need for him to be distressed, I was glad to get rid of the bladder and the cancer. The stoma and bag is proven technology and usually works very well once you get used to it. The stoma nurses are very helpful, friendly and willing to listen so I'm sure your husband will soon be a confident user.

My husband was a very keen tennis player, though I stuck to pilates and gym after osteoporosis. Husband is still here and was playing until a knee replacement and later arthritis a couple of years ago (aged 78) now we walk a lot for fitness. If your husband wants to keep up his tennis I'm sure that will be possible once the surgeon says he is healed enough. I expect he'll start slowly and build up.

Before the op I suggest your husband does as much core exercise as he can - the stoma does affect the core and I wish I'd been more diligent on my pliates. And it takes a while to get back strength in that area. If you have a gym with trainers where you play tennis that might be useful. 

Many men seem to be given wide hernia belts after the op - his stoma nurse will deal with that. I use an inch wide elasticated belt to hold the bag firmly onto me. The bag  adhesive works well if you make sure the bag is warm before fixing it but this belt helps keep it in place while you are active. I also advise proper stoma pants with a pocket to hold the bag as it fills. Some people don't use them but again the elastication of the cotton material should help him feel comfortable. He will get into the habit of emptying the bag regularly as he notices it fulling.

I recommend looking at the Urostomy Association website where there is a lot of information on bags, operations etc. I found a recent webinar on exercise with a stoma helpful and there is a pilates/physiotherapy specialist in it who can be contacted for more info on exercise after a stoma. There was a patient who got back to climbing up mountains and  also and article about another who runs a lot so tennis sounds eminently doable. Good luck.

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Thank you.  We play pickleball and padel so not as strenuous as tennis!  I will show him all of the feedback

Thank you. I will show him your feedback x

Emotionally I wish I had known how up and down the recovery process can be.I did get very depressed at one point but I was recovering alone during the pandemic which wasn’t ideal.I took up hobbies that were gentle and that did help to pass the time.I felt better when I went with the emotions rather than fighting them.I’m sure not everyone feels emotional but one of the ward dr’s said it was common after major surgery.Practically you will need to have a bit of space for stoma supplies.People have their own system for bag changing but it’s easier if you are organised.It does become routine like teeth cleaning.You get more confident with practice.Jane x

Hi pillar 

I think practically as others have said trying to get as fit as possible but he is active anyway so this will be a benefit.

My operation was planned for the end of March but due to me being  taken off chemo a session early it was brought forward. I was given six days notice before my op so I didn't have too much time dwell on it. I kept telling myself it had to be done. Your husband mustn't fear this. He will be in the hands of highly skilled people  I just kept thinking of the life I can still have after the op 

Best wishes 

Mark

I will make sure to get a box for everything he needs so it can be easily accesssible (not sure how big this needs to be?). I think major surgery definitely comes with emotional ups and downs. He is not one for talking about his feelings and i think this will be a major learning curve for both of us.  I will encourage him to use this site. Thank you for taking the time to reply

I have only travelled in the UK since my op but many others go all over the place. The trick is to sort out what you really need to take and if you are going to your own home you probably have a lot of stuff there. Stoma bags and other supplies can be bulky but extra baggage allowances will help you there. You can't leave stoma bags there probably because they could deteriorate, although maybe night bags could stay - your supplier can help, once you know what kit you are using.

By the way, night bags are the best - no more getting out of bed to pee in the middle of the night! And one of those in your hand luggage means your husband can always attach it if there are delays at any point. I also use a leg bag to double the volume before I need to empty the bags when we are travelling.

We also get radar keys for disabled toilets in the UK- a great queue jumper - as well as a card to help one queue jump in theatres, etc.

Heat can affect the bag adhesive so there may be leaks - he will need a change kit when he goes out here or anroad - mine lives in the bottom of my daily crossbody bag - stoma bags, adhesive removal spray, rubbish bags for rubbish and wet clothes, change of pants and thin trousers. As the Girl Guides say 'be prepared'.

Hope this is useful. And the bag suppliers and Urostomy Association have info on travelling when you need it.

Emotionally - life after a stoma can be as good as before the cancer. Different, but the bag is not a barrier to a good life. And knowing the cancer has gone is a boost.

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