Bladder cancer

Hi Julin and welcome to the stoma group.

It can be hard to imagine life with a stoma before your op happens, and quite scary in some ways, but the reality was much better for me than I imagined.

I had a different operation for my particular cancer, but lost my bladder along with my rectum, so actually have 2 stomas for life now.

I’d encourage you not to use the word “fitted” with a stoma if you can. The word we should use in relation to stomas is “formed” as it’s part of your own anatomy rather than something which is fitted or added to you. Has your team explained exactly what bladder removal involves and how the urostomy is made? 

I’ve been living with my stomas for over 6 years, so to answer the main questions you’ve asked:

Stomas do not hurt at all in themselves. The only thing I’ve found painful at any time with either stoma is the skin around it if it becomes raw or irritated. For me that happens very rarely,  That brings me to your next question about stoma bags leaking, and yes, that’s possible. It can take time when your stoma is new for everything to heal and settle down, so you might need to try various different bags and products as you recover from surgery and the stoma size changes. I would very rarely have a bag leak nowadays.

You need to make sure that the bag is of the right type for you, and that it is properly measured-there is no one single type of bag which suits everyone, and there are lots of different types on the market. The stoma nurses will guide you on how to measure the hole in the bag so that it fits snugly round the stoma, and can let you try different types of bags to see which type suits you best. 

I personally have not changed the type of clothes I wear, and haven’t felt the need to buy any specialist underwear or swimwear for example. I wear exactly the same things I’ve always done, but some people find they prefer specialist stoma underwear. It’s really just personal choice.

I’d recommend getting a waterproof sheet for your bed to save the mattress in case you are unfortunate enough to have a leaking bag. Usually leaks are caused by letting the bag become too full before emptying, and you soon become able to judge when you need to empty the bag. During the night, you connect your bag to a bigger capacity night bag which means you don’t have to get up in the night to use the loo.

If you have other specific questions, please feel free to ask-no question is too silly, and we have all had to learn. It becomes matter of course to manage stomas with a bit of practice, so although it can seem daunting at the start you’ll soon get into the way of it. 

All the very best with your upcoming surgery!

Sarah xx

Hi Julin,Welcome to the group.I hope you will come over and join us in the bladder cancer group too.I haven’t really got anything to add to the excellent advice given by Sarah.The stoma nurses should be on hand to explain the care of the stoma.I had to be able to change the bag unaided before I was allowed home from hospital.It’s all a bit strange at first but you soon get used to it and you will develop your own routine at home.Jane xx

Hi SarahH21

thank you for sharing your information, I feel overwhelmed with everything that’s happening at the minute. My appointment has come through to see the stoma nurse so am sure between you all I will get my head round it 

Julin xx

Hi Winkers60

thank you for taking the time to reply, I thought there was only one cancer group till I came on here, feeling overwhelmed at the minute and not very good with getting round the internet  but will join the bladder group as well when I find it . I have my stoma nurse appointment later today, I like the fact I can come on here and speak with people that have already been there 

Julin xx

Morning Julin 

If you click on this link I’ve made here, it will take you directly to the bladder group.

Bladder Cancer Forum

There are many lovely, very helpful members in the group who will make you very welcome. They have a wealth of experience of dealing with bladder cancer themselves and will understand exactly how you feel.

Sarah xx

Hi Julin,It does feel overwhelming at first.Finding out you need major surgery is a shock.Best wishes for your appointment.It’s likely to be a chat about the stoma and stoma products.I watched a video of someone changing a stoma bag at mine.See you in the bladder group.We will all be there to answer questions and support you,it’s a friendly group.love Jane xx

Hi Julin. I hope you’ve seen the stoma nurse by now and that most of your questions have been answered. I found all of the stoma nurses I met to be incredibly helpful and happy to answer all of my ‘idiot’ questions.That was incredibly reassuring. It’s a lot to get your head around so don’t be too hard on yourself. 
Good luck!

Hi HazelHedgehog

been to see stoma nurse today, was very informative and confusing apparently she will come on ward every day to show/help me. Then there was something about injections that I would have to do my self for a few weeks, though it looks a bit like a epi-pen so not difficult. I have forgot what she said happens the first 6 weeks, to much info 

Julin

Yes that’s what happened to me. While I was in hospital after the operation one of the Stoma nurses (my hospital had a team of 5) would come to see me every day to answer questions and change the bag on my stoma and make sure everything was ok. Over the week I was in hospital each day I did a bit more of the bag changing process while she was there until I was confident to do the whole thing myself. 
As far as the daily jabs go they started while I was in hospital and I was shown how to do them myself when I got home. I think I did them for five weeks in total - one week in hospital and then I was discharged with 28 to carry on the daily dose. If I remember correctly (never a certainty!) they were to prevent clots after surgery. As I said earlier it’s a lot of new information to take in so no one will expect you to remember everything they’ve told you. I found it helpful to have a notebook and write down questions and answers so I had something to refer to. 

Hi Winkers60

I have seen the stoma nurse yesterday, she has explained such a lot and I will be seeing her again tomorrow, then daily while Iam in hospital (2weeks) I will be taking pen and paper tomorrow as so much to remember and I wasn’t even on my own 2 heads better than one.

sorry to sound thick you put on one of your post about the bladder group, I don’t know how to find that, thought I was on it