Hey new here!

Hi Helenjayne,I had bladder cancer and had a urostomy in 2019.You will get to meet the stoma team before surgery and learn about having a stoma.After surgery the stoma nurses should be there to guide you through the stoma care.I wasn’t allowed home from hospital until I could change the bag unaided which I was able to do after a few days.Post op the stoma will shrink so it’s important to cut the hole in the bag to the correct size to prevent leaks.Once the stoma settles to its size you can order pre cut bags/pouches if you prefer.The stoma nurses will suggest bags for you to try.I’ve been lucky and always had the same make of bag but some people have to try various makes before they find one that suits them.I still wear the same clothes as I did before the surgery but have added some tunic tops as these are comfy.You can still swim and live a full life with a stoma.I empty the bag a few times a day.Once you get into a routine it doesn’t take long to change the bag.At night the bag plugs into a much larger night bag.This has a long tube to enable you to move in bed.It’s good not have to get up in the night.My surgery was life saving so I’m grateful to have the stoma and adapted quickly to having one.I hope this helps.Jane x

Hey Jane, Thank you for the reply. Sorry if this is too personal but has it affected your sex life at all?

Totally OK if you don't want to discuss this though. 

Helen x

Hi Helen,I don’t know as I haven’t had a sex life since the surgery.With bladder removal they shorten the vagina and this can make sex painful.I didn’t see my partner John at all during the pandemic as he had to shield due to a rare muscle disease.Then my mum died and I’ve had a nightmare trying to sort out all her affairs.John’s mum is getting frail and forgetful so he is caring for her although he was in hospital last week.We have hardly seen each other it’s a difficult situation.We would both like to get back to a physical relationship though.I hope someone can answer your question.I suppose it will depend on what they remove internally.Jane x

Hey Jane, thank you for sharing. 

I hope things get better for you. Thank you for chatting with me I really appreciate it. 

Helen x

Thanks Helen,It has been a tough few years but John is really supportive.Do you have supportive family and friends ? I’m so sorry your cancer has come back and you face more surgery.I’m always happy to chat on the boards or privately.Jane x

Hi Helenjayne 

I had a permanent colostomy and a urostomy made in 2020 as part of a larger surgery. Once I got used to it, things were fine. I see them as saving my life so I’m ok with having both. I don’t want to let them rule my life, and I find I’m perfectly able to live a normal life with them. Not saying it’s a bundle of laughs if you have a leak, but that’s rare. Is there anything that particular that concerns you? I notice in your post it’s not a certainty you will have a urostomy, but you will be having a colostomy. 

I’m posting this sitting in the sunshine in Lanzarote-I still go on holiday regularly and can do everything I did before I had stomas so I hope you’ll find that encouraging! 

Sarah xx

Thank you jane, Yes I have very supportive friends and family. There all making a fuss of me this week as they know I'm not really in a very good place at the moment. 

Helen

Hey sarah, thank you for the reply. I guess the thing that is bothering me is the intimate side of things. Like I can totally get on board with the day to day living with urostomy and colostomy. But I'm worried it's the end of my sex life and I'm only 37. 

Thanks Helen

There’s really no reason why it should be the end of it. You can get lovely lingerie still to make you feel good, and bags do not get in the way of having intimacy. It’s different for me as I have also had my vagina removed as part of my bigger surgery, so that really does make it impossible from the point of view of penetrative sex. Bags alone would definitely not have meant the end of my sex life! 

Sarah xx