Living with a leg bag

Time to empty - anyone fancy a VB? 

One of the joys of prostatectomy recovery is the use of a catheter. This isn't as bad as you first think but there are some hints and tips that may help anyone who has recently been plumbed up with one.

When you initially wake up the catheter tube is already in and is connected to a fixed bag on the side of the bed. So needless to say do not try to get up! Despite the catheter (which allows urine to flow automatically into the bag)  I still felt the need to urinate when I woke up. This is apparently normal because the brain interprets any kind of pain signal from that region in the same way and so prompts you to go to the loo. Again do not get up! Just relax. If there is any leakage someone else will take care of it. 

When they transfer you to a leg bag (which straps onto your thigh) then have a think about which side you want. It's best to have the bag on the same side of the bed that you get into - so if you sleep on the right hand side, have it on your right thigh. This makes it easier to manage the night bag. If you have a day bed it's also easier to set that up so you get onto it from the same side. That way you can dangle the leg with the bag on off the side during the day to easily check how full it is. 

The day bag only holds 500ml so you end up emptying it more than you think. A handy tip from a nurse was to tear a square of toilet paper before you empty the bag into the toilet bowl. That way you can roll up the paper and wipe out the tube without having to turn and look, which invariably leaves drops of urine on your ankle, foot or the floor.  

Because this is an Australian summer I am wearing shorts, and I can't imagine how much harder it would be to manage the bag with long trousers. With shorts on you can easily check & empty the bag and get them on and off over the various strapping with relative ease. Although you do constantly feel like you have something in your pocket. So wear shorts if you can - the shame will quickly fade and the ease of use will live on. I've even walked down to the end of the road with the bag showing, although it did freak out a passing dog walker.   

The colour of the urine is both useful & vaguely fascinating. If you have a lot of blood in your urine then it's time to call for assistance but don't be alarmed if you see the odd blood clot or it looks a little darker at times - we found that it became darker after eating. At times it was graduated and quite pretty, it looked like a Tequila Sunrise, although that could be the lack of alcohol kicking in. 

Unfortunately the catheter is not perfect and you will probably get urine leaking from the end of your penis at times. This was pretty distressing at first but after a call to the doc we were reassured that as long as the bag is consistently filling, a little leakage is nothing to worry about. I ended up using pads for most of the time that the catheter was in place because of this. It may be worth getting some 'briefs' style underwear in a size larger than you normally wear so that you can fit pads easily but not overly constrict the catheter - pads don't really work in boxer shorts.

They will tell you that leakage can happen if you sit funny and kink the tube. I found that leakage was fairly common and happened when badly constipated, when trying for a bowel movement, when laughing or coughing and also just after emptying the bag. I think the latter was because I was trying to fully empty the bag by squashing it and that caused the bag just after the entry port to get pushed together, making it harder for urine to enter. So after that I normally left a small amount of urine in the bag when emptying and also rearranged the top section on the straps to try and open the entry point. 

You may also get some bloodstains from the end of your penis. Obviously if it is streaming out and pooling then call for an ambulance, but remember that blood tends to spread in water so a small amount of bleeding into a wet pad will look horrific but may not be significant. So don't panic if you see red but also keep an eye on it. I'm not sure where the transition point is so ring your doctor if you are in any way concerned! But if you have had bleeding make sure you clean up all the tubing and wash yourself well.     

When you shower you also keep the bag on so it gets a bit wet and it is hard to fully dry. Remember this because after a shower you'll suddenly notice damp patches on your clothes or furniture and panic that you have leaked. That may be true, but it may just be due to the wet bag soaking through.

The leg bag is not large enough to last overnight and so you will use a 2l 'night bag' when you sleep. This is a larger bag that attaches to the drain tube of your leg bag with a longish hose. The night bag then sits on a stand at the side of your bed. Make sure you hook up all the tubing after you have changed for bed and only open the drain on the leg bag when you have connected the tubing!  I needed to wear pads for the first couple of nights but the stable position and lack of movement means that there's not much leakage during the night. So by about day 4 I ended up just sleeping in boxers, but on a mat on the bed just in case. You need to sleep on your back, but you can roll onto your bag side if you  dangle your leg out of bed if you need a change of position. Do not roll onto your non-bag side as you'll pull the night bag over! There is a non-return valve on the night bag so it should be spill proof, but it still leads to nighttime panic.    

In the morning carry the night bag through to the bathroom, turn OFF the drain tube on your leg bag and disconnect it. You can then either throw the thing away full or pierce the bag, tip the contents down the loo and just throw the bag away.    

I know this all sounds horrific but it becomes normal fairly quickly! I am looking forward to getting mine out tomorrow but in some ways it's a reassuring presence. I'm scared of the next steps and finding out how bad the incontinence will be.