Catheter 101

13 Things They Don’t Teach You in Catheter School-
(or Learning from Experience) Advice to New Users

1. Prescriptions are Needed – The only items that legally requires a prescription, are the catheters themselves. If you could find a corner drug store that sold urologicals the only prescription you would need to buy everything you want, is for the catheters. However, if you have insurance that pays for durable medical supplies, speicifically urologicals, then they may ask for a prescription or letter of medical necessity for everything on your list. And different vendors and different prescription companies handle these orders differently, of course. Some will let you buy a large amount for several months. Others will only sell you one month’s supply at a time.

If you have the one month arrangement, like I do now, then you have to guesstimate how much you will need each month for the next year. Typically I need one of everything (catheter, tubing, night bag, leg bag, straps) each month. But every now and then I have a month that I need 2 or 3 of each. So, I decided I should have a prescription for 2 of everything to be on the safe side, and stock pile the extra.

Usually the vendor won’t let you change quantities from month to month, though they might let you skip a month once in a while (don’t ask about the logic there, I don’t get it). I highly recommend that you know your insurance benefits and who you supplier will be BEFORE you ask your doctor for that prescription. Each year the prescription has to be renewed.

2. Vendors Can Be Hard to Find for Urologicals – especially if you HAVE insurance. I know, that sounds totally backwards, but it’s true. In Maryland I had so much trouble finding a vendor that sold urologicals and took my particular insurance plan, that I gave up and bought things out of pocket. And if you do find one that sells urologicals, they might not sell exactly what you want.

Here the vendor I have is decent – calls to remind me that it’s time for an order, no shipping charges, quick delivery. But I would like one type of reusable straps that last a year, but they won’t provide them for me – because my insurance’s reasonable and customary isn’t high enough to merit them selling it to me! Instead they sent me a substitute which of course didn’t fit because it was made for a legbag made by another company. And though they do sell that item I want in general, they wouldn’t sell it to me for cash either – because they only take customers WITH insurance! OK, I buy those straps out of pocket once a year. It’s easier than finding another vendor.

If you don’t have insurance? Just get the prescription for the catheters, for half a year, or a year, so you don’t have to mess with monthly orders, and find someplace online that sells everything you need. Express Medical is like the Amazon of medical supplies, good prices, super good service.

3. 10 cc not needed – Whatever size catheter you get, it will also have an amount listed for how much water you are supposed to insert into the bulb. But, you don’t have to put as much as they say! All you need is enough, that with a gentle tug of the catheter it won’t pull out. I put 4 – 5 cc into mine, and it holds. I have found that a smaller bulb reduces the amount of irritation in my bladder and also the amount of autonomic dysreflexia.

4. That being said – it is possible to pull a catheter out through your body (urethra, penis, suprapubic channel, whatever!) with a really good tug. I’ve done it twice. One time I was getting into bed and the far end of the catheter had gotten hooked on the far arm of my chair. I got into bed, the catheter stayed in my chair. For a description of the other time, see my blog titled “odds and ends”. Well, my point of view is that this is an argument for a smaller balloon, right? Less damage when it comes through! Others might say it’s an argument for a larger one, to hold better. Well, given what happened with me these 2 times – I’m glad the balloon was SMALL.

But if this does happen to you – don’t panic. You’re not going to hurt yourself really, unless maybe you do it all the time, and then the channel will stretch and you really will need a larger balloon, maybe even a larger catheter. You might bleed a bit right afterwards, just get another catheter in there soon and relax.

5. Hide the legbag – Do everyone a favor and get a legbag you can cover up with your clothing. There are probably hundreds of them out there, all sizes and shapes, made for children and people who drink those BIG GULPS too. The most typical shape is like a narrow hot water bottle, but they come kidney shaped and super long and skinny. You can wear them on your thigh, calf, behind your knee. I even have a tiny one I can tuck inside a bathing suit.

Recently I was at an event where a very nice woman, using a wheelchair, was wearing a lovely red long dress, and under her chair she had hung an overnight urine bag which was half full of urine. You know, we don’t want to know whether you’re drinking enough fluids for a properly diluted urine. I’m all for getting rid of stigma about catheters and lack of bladder control, but it’s one thing to know about it, and another to display it. I didn’t have the opportunity, and don’t know that woman well enough to call her later, but I wanted to say something to her. Did she think we couldn’t see it?

6. Emptying the legbag – Sometimes your legbag gets full, and there’s no accessible bathroom around. I’ve used a fast food drink cup, an old water bottle, or anything at hand to put the urine into, and then dump it someplace out of the way, discretely. And at times when I can’t pour the urine out, I’ve asked my husband and even when they were small – my kids, to dump it for me. The kids will not like this activity, but they’ll do it, and trust me they are better off helping you out and not seeing what could result with an overfilled legbag! More on that in a minute. On rare occasions I’ve even asked perfect strangers to dump a cup of urine out, say in an airplane I’d ask a flight attendant, or in a public bathroom where the stalls are not accessible. People are generally very helpful, and besides – you’ll never see them again!

7. Bladder infections happen, bladder stones and cancer and other nasty things too. Learn to pay attention to how your body feels, and catch when something feels different early. Infections can cause bleeding. And I was even more prone to them when I was intermittent cathing, when more urine would sit in my bladder and the bugs would multiply. So, if you use a foley catheter but it isn’t free flowing all the time, watch even more closely for infection.

8. See the doctor - I’ve written more about bladder infections in “a bladder story”. But the best advice I could give anyone now is that you should have regular annual visits to an urologist. You need it for that annual prescription anyway. But an annual ultrasound and xray of your bladder and kidney is smart as well.

9. Equipment may fail you – Despite that you are using Medical Equipment (capital M, capital E!), that is no guarantee that it will be well made. I bet that half the stuff comes from China. I don’t think I’ve ever had a problem with a catheter itself, but all the other items have failed for me at least once. One legbag, think hot water bottle, had its 2 sides stick together, so it held about 50 cc instead of 500. Not good. The worst problems I ever had were with the overnight bags emptying valves. I’ve seen them put on upside down, and unable to stay locked so that urine just ran right through onto the floor. The first time this happened I was in a hotel, oh how embarrassing to report to housekeeping. After that I checked that valve more carefully, but it happened again at home one time. The valve seemed ok for a couple of days, and then failed me. Big stain on the rug that took 2 cleanings to get out.

10. Leaks between legbag and tubing (or catheter if you don’t use extension tubing) can happen! This refers to what happens when you let your legbag get overfull and don’t empty it fast enough.

I was at Disneyland with my 2 young sons and first husband. They were off to ride Space Mountain, or some other ride that had a huge line. I made the mistake of not emptying my legbag before they saddled me with all the jackets, glasses, hats, drinks and souvenirs. Wheelchair people are talking grocery carts, don’t you know? I couldn’t move, so put most of it on the ground to wait, but still couldn’t leave the stuff there. And I didn’t want to go far anyway, because then they wouldn’t be able to find me. It was a hot day, so to keep cool, I kept drinking some of those drinks, and before I knew it, my legbag was full. Still no family, long line I guess, they’ll be back soon. I’ll be ok, my bladder will fill up a bit too, no big deal. Nope. Instead urine started to leak out between the legbag and the tubing, and soaked my clothes from knee down. I was a smelly mess till my family finally got back and I could head to a bathroom and change clothes. This had never happened before, and never has since either. But the joins between legbag and tubing and catheter, that seem so tight, where nothing ever gets out, aren’t perfectly tight.

The other risk you take with a full legbag is in getting autonomic dysreflexia, which I’m sure I’ve talked about in my blog somewhere, but I’ve lost track. If your bladder is no longer used to stretching, you’ll react faster to bladder pressure, and AD can be life threatening.

11. A Catheter can get pinched – if it gets tucked down between your legs wrong, or your underwear pinches it, or at night if you lay down on top of the catheter. I have this problem most in bed, especially since I’m tired when I arrange myself for the night, and aren’t thinking my best. I hang the overnight bag on the seat of my wheelchair. If I face that side of the bed, it’s easy to drape the catheter straight out from my body, so no weight on it. If I turn away from the edge of the bed, I’ll thread the catheter between my legs rather than put it under me where it will get pinched. If I put it over me, then it’s harder for the urine to flow. Between the legs seems to work ok.

If a catheter gets pinched, you guessed it, you’ll leak around it – from urethra or subrapubic hole or penis. Your clothes will be soiled, or your bed will be wet. On a positive note – I haven’t slept with many men in my life, but in my limited experience not one has had a problem waking up with a little urine on them. They just go wash it off, like my kids pouring out the pitcher, people can get over this. If not, perhaps you don’t want to be in a relationship with them anyway! There are a whole lot worse messes they might have to help you with.

12. If you are one of those people who leaks once in a while – wear pads! Who is going to know? You’re sitting down anyway! Pads, pampers, depends…. Lots of things available. I got used to wearing pampers years ago, before Depends even existed, because when I was intermittent cathing I leaked all the time. It was usually not much, but enough to get me to find a bathroom. It got to where I felt naked when I didn’t wear them. And there are 2 side benefits besides keeping your clothes dry.

The chemicals in those products do keep your skin drier, just like the Pampers’ ads say. This is good for your skin. We run the risk of pressure sores and skin breakdown as it is, but adding urine sitting on your skin for any length of time is not good.

And, keeping your clothes dry also keeps the seat you are sitting on dry. I remember one embarrassing time on an airplane when I leaked on my seat, and had to tell the flight attendant so they would take care of it before the next passenger sat down. I am sure flight attendants have seen everything, but it’s embarrassing all the same. At that time I was intermittent cathing, but that incident started my policy of wearing a foley and legbag for all flights. You just never know when you might be delayed, and I haven’t seen an accessible bathroom on a plane yet.

13. Last but not least – don’t do stupid things – like forget to close the valve of the legbag after you’ve emptied it – especially when wearing brand new UGG boots! I think that one is self-explanatory, except to say that if you ever make that mistake – just throw the boots away, cleaning them won’t work.


The problem is that being a paraplegic kills any bladder control. The bladder will reflexively spasm when it wants to, and its size will decrease. The condition is called neurogenic bladder. Some medications can help relax the bladder to hold more, but they have irritating side effects like dry mouth, which make you drink even more. For me they don’t work anyway. My bladder gets stretched, yes, and won’t spasm or leak either, but it doesn’t stop the dysreflexia and actually makes that worse. I’d rather have wet clothes.

The purpose of a catheter is to move urine from bladder to toilet, via a legbag, with as little mess, smell or nuisance as possible. Most of the time everything works fine. I’ve used foley and suprapubic catheters exclusively for 15 years, and used them in conjunction with intermittent ones for over 20 years before that. In all that time I’ve probably had no more than a dozen annoying or embarrassing incidents that I hoped no one would ever hear about (not counting bladder infections or the rather routine leaking that occurred when intermittent cathing). That’s about one time every 2 years, so not too bad. Still, on that one day that something does happen, like the day in Disneyland, you can’t imagine a worse day.