How do you know the time?

Hello there, I will be joining the stoma club, hopefully next week, if planned surgery goes ahead. So obviously got to learn all about care and management of the new way to get rid of my waste liquid.

The initial thing that concerns me, is how does one know a suitable time to change the bag? I have been catheterised a couple of times in recent months, and thus know that you can pu without any knowledge of it happening. So with no bladder left to control the flow of urine, how on earth can you be sure that the new outlet won't suddenly come into use, when you have removed the bag?

I imagine myself having to perhaps lie in the bath, or stand in the shower, so should it happen, at least I am naked and can easily wash myself, then continue with the change operation once clean and dry.   

  • Hello KidneyBeen

    I’ll tell you what it’s like for me. Other people may have different experiences of course. You obviously don’t have control any more, and basically my urostomy works away but I don’t normally feel it. And it basically goes all the time! Typically I would shower with my bag on, but sometimes I do shower without, but as soon as I leave the shower it is going again-not huge amounts obviously but a “dribble” or more. It goes during changing the bag too-you just can’t stop it. 

    Changing the bag needs to be a fairly quick process and I need to have a towel or paper towel to hand over the stoma and under it as I clean my skin and get my bag ready unless I want everything to be wet. 

    Obviously the liquid in, liquid out rule does apply, so if you’ve been drinking something there’s more to come out. I change my bag on my bed, lying on a towel after my shower normally. I can at times sense the urostomy working of course, and the bag can have wind and gurgling noises. During the day, I’ll just pat my bag to sense how full it is, and go and empty it when it’s about half full. It can get quite heavy if I’ve had a lot of liquid, so I probably go and empty it around the same amount of times I would normally go to the bathroom when I had a bladder. Since I have no desire to get up in the night, I connect the bag via a tube to a larger bag on a stand beside my bed, and everything drains into the larger bag which I empty in the morning.

    All urostomy bags have a little tap at the bottom, so you are just going to the loo and turning on the tap to empty during your waking hours, not constantly changing the bag itself. 

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thanks for sharing your experience, SarahH21. Seems like it can be a bit of a battle to try and control something that has basically no control!

    I have read the Stoma user guide given to me by the Clinical Nurse Specialist at the hospital. This contained a practice kit, which I haven't as yet felt any desire to use. I suppose I'm in denial mode, when it comes to it.

    Although I'm trying to be more positive about the situation, by joining this forum and asking a few questions. The outcome is inevitable, if I want to be rid of the bladder cancer and survive it, so got to man up I suppose. But I'd be lying if I said that I didn't mind having to have a stoma!

    KidneyBeen

  • I personally didn’t use the practice kit. But others find it helpful, so it’s an individual choice. I don’t have a “spout” to my urostomy so mine has ended up not looking like I envisaged anyway! Actually it’s much better than I envisaged I have to say.  

    None of us can really properly imagine how it will be afterwards I don’t think, but while I’d rather I didn’t have to have 2 stomas, I’m aware I would definitely not still be here without them saving my life. I think I adapted pretty quickly because there was nothing else for it, and there was no going back at all, as my colostomy is also permanent. I just had to learn a new normal I guess, and I’m so used to having them it’s just second nature now. You will adapt. It just takes time to get used to it. 

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Kidney Bean 

    Thanks for posting your update. I love the name still makes me smile. It’s great news that your treatment plan is moving forward. I’m an ileostomy so completely different output however similar amounts. I’m emptying every two to three hours. I shower with my bag on, get everything sorted and change after drying

    I didn’t get chance to practice my stoma kit either but it didn’t cause me any worries. 
    Good luck with it all 

    Best Wishes

    Artsie Ann 

  • Thanks - as regards a best time to do a bag change.

    I guess first thing in the morning is likely to be most appropriate, as my system should have hopefully drained pretty well overnight, with a larger night bag to collect the output. It makes sense as it can become part of the get up/wash/dress routine, just have to allow a bit longer to complete the exercise..

    KidneyBeen

  • I change my bags after my morning shower. It takes me half an hour nowadays to shower, wash and dry my hair, change 2 bags and get dressed so you do get quicker with practice! 

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi KidenyBean and welcome to the club!

    I've had my stoma for 9 months now and have a bit of a bag-changing routine going. Like SarahH21 says, morning shower time works best for me and mostly I change my bag every other day, but occasionally leave it for 3 days, but no longer.

    I do it before breakfast to minimise the risk of unexpected flow, and sometimes this works and sometimes it doesn't! I quite like to have a quick shower without the bag off with a dry wipe close to hand in case of sudden activity (loo paper is no good in the shower!).  I just think its nice to get the air and water at it even for a short time. When I get out of the shower, I judge whether I can dry myself off before the stoma becomes active and begin the task of replacing the bag and get it done as quick as I can. Sometimes there's a holy mess, but mostly I do OK!

    I hope for your sake your surgery goes ahead as planned as waiting for the inevitable is horrible! I hope it all goes well for you too.

    Good luck and come back when you're ready.

    Osboz

  • Hi there, getting the hang of it now. Stoma Nurses demonstrated bag changing twice at the end of the week, then as they don't work at the weekend, I was on my own. It was a bit daunting at first, so I got a ward nurse to sit with me while I did it on Saturday. Then Sunday, I went completely solo. Monday saw the Stoma Nurse again, who watched me deal with it. So I'm confident I know what to do now. It has been quite unpleasant, with lots of muck exuded from inside, which hopefully will improve with time. Trying a second type of bag now, the first ones had a flat adhesive mat, new ones have a convex flange. Not sure what the purpose of that is, unless it's to push the bag further out, as my stoma stands out about a centimetre from my abdomen. Any advice on which is best would be appreciated.

    KidneyBeen

  • Hi Kidney Bean

    Thanks for the update. It sounds like you’re doing really well   It’s a little daunting to start. As you know I’m an ileostomy but imagine the stoma’s are pretty much the same. 

    ive got the Convex type  for me it was a game changer my stoma seemed to function better and six weeks she was formed and I am able to have the bags cut for me if I want. 
    I was in the flat bags for two weeks and had lots of leaks so hopefully you will benefit by an early change of style

    Hope all goes well 

    Best Wishes

    Artsie Ann 

  • Well done you, KidneyBean! That's a lot of progress in a short time!

    Mine's an ileostomy too, but I think the stoma nurses tried every type of bag and combination of things they had on me before settling on a convex one. I had constant leakage problems for first 3 weeks. I've had no reason to change since - if it ain't broke....!

    I think it's another one of those 'horses for courses'. There are so many different types of bags on the market it's bewildering! I'd suggest if you find something that works, stick with it! 

    So glad you got through surgery and seem to be doing well.

    Take it gently Heart

    O️sboz