Anyone have experience with catheter bags...

Discussion in 'General' started by megkc03, Dec 28, 2010.

  1. megkc03

    megkc03 Well-Known Member TS Moderator

    My son is having surgery in 13 days(who's counting?). As it gets closer, I worry about the catheter. He is going to need it for 7-10 days. Last time he had the surgery, it was the full 10 days. The difference this time is he is potty trained, so he will have a catheter bag.

    I just don't know how that is going to work. I really don't want to go to diapers, as I am afraid he will regress in the potty training. I mean he does awesome-daytime and nighttime trained. He hasn't had any accidents since he was trained back in August. I just feel that putting him in diapers, having him go through surgery, and a painful one, could make him regress. Granted, if this whole catheter bag doesn't work out, then I will do it. I'd like to avoid it if possible...

    I just don't know how him having the bag is going to work... getting in and out of bed? General movement throughout the day... Is there a chance it can come lose? All I need is pee flying everywhere! I know there are straps to keep it in place. I'm just worried he's going to bust the bag! Out of the three kids, he's the most calm. LOL! Boy am I thankful for that! It's going to be a long 7-10 days of constant movie/TV viewing to keep him still....

    If anyone has dealt with one in a child this young, or similar, I'd appreciate the stories! :)
  2. Leighann

    Leighann Well-Known Member

    Sorry no experience with young children, but when I was 20 I had surgery that required me to have a foley catheter for 3 weeks (while my bladder healed). One week was in the hospital and the rest was at home. I could move around ok with it, but it was uncomfortable at times. I was recovering from abdominal surgery too, so I wasn't going out much so I can't imagine running around with it. I wore loose fitting pants with it to my f/u doctors appointments. While I was worried about pulling it out (rolling over on it while sleeping), I don't think it can come out unless you deflate the balloon that holds it into place.

    Maybe you can you put him in footy pjs or something else to keep it close to his leg while he plays?

    What did the doctor suggest? What about just using pull-ups and calling them his "Special undies for after his surgery"? Does he like Diego or Cars? I think they make pull-ups with those characters on them. That would avoid the whole cath bag issue all together.
  3. Tiffany S

    Tiffany S Well-Known Member

    I'm sorry you have to deal with this. My son had two spine surgeries when he was 2 and again at age 3. Both times we when with diapers. The doctors had warned us that a catheter was a higher risk of infections. This was the kind that has a tube that goes up in to the bladder, maybe your talking about something different? My son had the catheter for the first couple of days in the hospital but the doctor was eager to have his body start peeing on his own. My son used diapers for about 2 weeks after surgery but was eager to be out of them as soon as he could get up and walk without as much pain. I know every child is different, but I wouldn't let fear of potty regression be the only reason for choosing a catheter over diapers. I can tell you that after my two c-section surgeries I wish I had diapers LOL. I got a horrible bladder infection one of those times. I'm a member of a support group for kids with urology problems, I do know some of them use catheters of different types daily. You can join and ask your questions at
    I'm sorry I didn't have the answers you needed. I hope you let us know how things go, when you can.
    I wish you and your family the best!
    2 people like this.
  4. lharrison1

    lharrison1 Well-Known Member TS Moderator

    No advice really I just wanted to give you a :hug:

    I had to go home with a catheter bag after having Sophia, my bladder just quit working-started back up after about a sucked and I did get a UTI from it. PP mentioned that high risk...I would worry about that personally.
    My guess is if you do HAVE to resort back to diapers/pull ups your smart little boy will go right back to the usual as soon as he can.
    YOu are one of the most amazing mothers I have the pleasure being friends with and if I know anything at all it's this :youcandoit:

    Love ya Meg!
    1 person likes this.
  5. lisagayle

    lisagayle Well-Known Member

    I thought I would add some info.

    My son is 3 and has had issues with urinary retention for about 2 years off and on. We've had a lot of experience with Foley Catheters. At first no one offered us any advice on how to make it easier on Kaleb. But through trial and error we've been able to make it to where he barely even notices it.

    The first thing, which is also the most crucial, is ask for a leg bag. Normally for kids they will give them a regular Foley bag which is rather large and has a lot of tubing with it. It's hard for mobile kids to handle. Leg bags are made for adults but we've figured a way to make it work for our three year old.

    So a Foley is a catheter that is left in, it has a balloon that is inflated with saline once it is in the bladder. This keeps it in so it CANNOT come out. He may tug on it or get it caught on something but it won't come out. My son is 3 and very active and he runs, jumps, plays, etc with it in and sometimes the urine gets a little pink but that's just part of the irritation from having it in, or so we've been told.

    So the best way to set it up is to use the elastic straps that come with it. Make them tight enough to hold the bag but not tight enough to cut off circulation. Then cut off the excess elastic. The nurses at the hospital will use tape to keep it in place but we've learned that the tape is just a pain. Instead we use a 2" ace bandage. (2" ace bandage around upper half of catheter bag) It's only wrapped around the upper part of the bag that can't hold urine and all the connections between the tubing and the bag.

    After the first night we used this, we noticed all the tubing cutting into Kaleb's leg so we improvised and added Gauze. We bought some super thick 4'x4' gauze pads. One Flat one goes under the upper bag and the connection site. Then one folded in half goes under the upper half of the connection. (Gauze under plastic parts) (flat piece under top of bag) Then wrap the ace bandage around all the upper stuff (as shown). Just make sure to make it tight enough to keep everything up but not tight enough to cut off circulation. TA-DA!

    I really hope all this helps and that the picture links work.

    We've tried lots of different ways to keep this comfortable for him but this is the only way that we've managed to keep it so he can still play and be a 3 year old. Also our son wears pull-ups with his at night (as you can see in the pics I took), but during the day he wears underwear. And that's only because he still has poopy accidents at night sometimes so pull ups are just easier for that.
    2 people like this.
  6. lisagayle

    lisagayle Well-Known Member

    Oh! And make sure that there is a little loop like the last picture I posted. If not, the tubing can get kinked and then the urine won't drain right. :)
  7. tinalb

    tinalb Well-Known Member TS Moderator

    :hug: Meaghan! No advice or experience here, but I will be thinking of you guys. I know you will be happy to get it over with!
  8. megkc03

    megkc03 Well-Known Member TS Moderator

    The Dr. didn't really say anything. We met with him back in October, and of course I'm thinking of nothing to ask! LOL! As the date gets closer, the questions start coming. He was very helpful though and said if at any time we have questions, etc, to give him a call and he can talk to us on the phone, or we can set up an appointment and meet with him. I'm thinking I'm going to try the underwear first, and if need be, have the pullups/diapers to fall back on. The problem with the diapers is that he would need to wear two pairs. One that fits, and we cut a hole in it for his penis/catheter to go through. And then one that is bigger to catch his poop. So I'm going to be buying diapers, cut holes in them, tape them, yada yada yada. LOL!

    Thanks for the link. I will take a look at it! He's had the surgery twice before, and he's dealt with the catheters then as well with no issues. The only issue now is him being potty trained vs wearing diapers. He needs the catheter in for seven to ten days to keep the opening of his I will definitely post his update!

    Thank you for all of that! I will be calling the Dr and finding out what type of catheter he is getting, etc. And THANK YOU for the photos. I'm a visual learner, so I NEED those photos! LOL! One question-what do you do for pants? Do you have him wear bigger sizes? My problem is Anthony is really short. He's three years old, but he can wear size 18 month pants. But they won't necessarily be baggy on him. Does you son wear baggy pants when he has the catheter? And how often do you change it? Is it messy? How is it at night time?
  9. lisagayle

    lisagayle Well-Known Member

    When we go out and about he just wears his jeans. Normally he wears a 3T but we bought him some 4T. They are a little long but we roll up the pant leg a little so he doesn't walk on them. When we're home he either wears shorts or else baggy cotton pants. Like the ones they sell at Walmart by Garanimals. Just little cheap comfortable cotton pants.

    As far as changing it out. If he's only using it for 7 to 10 days the same catheter should stay in. However they may give you an extra bag. If they do make sure that you have LOTS of towels because it can get messy. Just make sure you pinch the tube that comes from the bladder so no urine can flow through it while you are switching it.

    And at night we keep everything the same except he wears pajamas. We make sure his pants are loose enough for the bag. We used to move his toddler bed to our room so we could make sure he didn't need anything at night when he had one in. Now that we're a little more educated about it all we let him sleep in his room. He tosses and turns a lot but it doesn't affect it. A couple of things to keep in mind though. If he's laying down there's no gravity to let the bladder drain. So it may seem like there's no urine in the bag when he first wakes up in the morning. But once he stands up it will all drain. Just make sure to empty it right away. Second - if it does drain into the bag at night and he has a lot to drink before bed, the bag may not hold it all if you get to use a leg bag. They are small and meant to be emptied frequently. So we normally cut Kaleb off about an hour before bedtime with the exception of a small drink of water after he brushes his teeth.

    What kind of surgery is your son having?
  10. megkc03

    megkc03 Well-Known Member TS Moderator

    Thank you. The catheter is staying in the full length of time. I'm wondering how often you change the bag. And my kid can DRINK! LOL! He tends to hold his pee...and once he's a GALLON! LOL! I bought one pair of size 3T sweats. I'll look at Walmart-good idea. Maybe even Target.

    He's having hypospadias repair. He's had it twice before(along with chordee repair the first time). The doctor is not happy with the final placement of the opening to his penis. Everything works fine, and will continue to work fine the rest of his life. The only problem now is that when he pees, he pees straight down. He has to sit when he pees. Which is fine. But this will give him the *option* of peeing standing or sitting.
  11. lisagayle

    lisagayle Well-Known Member

    We don't change Kaleb's bag unless it gets a hole in it or one of the holes in the plastic where the straps go break. He's never had one for more than 2 weeks and I don't think we've changed it more than once on the longest stretch.

    The cool thing about the catheter is that as his body makes urine it just comes out, so just keep an eye on it and we normally empty Kaleb's once it gets half full.
  12. Tiffany S

    Tiffany S Well-Known Member

    Hello Lisagayle,
    This is wonderful information to share! Please concider joining my yahoo group "urologykids" so you can pass this on to many that may be helped by it now and in the future.
    Thank you!
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