Changing Tubing

Once a month, I change my catheter and all my tubing. It takes about 20 minutes and isn’t hard to do. I usually do it before and after taking a shower, so instead of taking 1 hour to shower and dress, it takes a bit longer. No big deal, but I do have to pick the right day, so that I have enough time to do it all without rushing.

Some people have to change tubing once a week, some can go for months, it’s very individual. The basic idea is to change your tubing often enough to avoid serious bladder infections, or worse - kidney infections. I think I’m doing pretty well to only have to do this once a month.

If you use a catheter, either conventionally or suprapubic, you are bound to have infections. I’d even say I probably have a low level infection most of the time. What’s important is not to get seriously bad ones – ones that give you a fever, or make your urine gunky, or cause you to have dysreflexia (or pain), or that cause your bladder to bleed. I get that kind of infection about once a year on average, which is low. Then, my course of treatment is first to change all the tubing! Then drink as much water as I can stand to flood my bladder, and if that doesn’t clear it up – to take a course of Cipro, which is usually 10 days. My urologist gave me a prescription for Cipro for just this kind of situation. He trusts me to self medicate for what feels like the type of infection I’ve seen hundreds of times in my life. He also knows that if this doesn’t clear up the problem, then I’ll be in his office without delay. The problem is that if I took a urine sample to him when I first thought I had an infection, it could be a week before they had the culture and sensitivity results back, and if I waited for that – I’d be miserable for a week. The usual procedure when you bring in a sample is to get some antibiotic to get started, and then change it later if the culture and sensitivity says it’s the wrong one.

The equipment I use – a foley catheter (in a large size since I use it suprapubicly), a reusable legbag with cloth straps (that I attach to my calf), an extension tubing to help connect the 2, an overnight urine bag that holds a bit more and that can hang from my chair at night. I need scissors to cut the tubing down to the right size and to open some of the packaging. And I need 2 syringes, not with needles, but just the plastic blunt ended type.

After the same catheter has been in me for a while, often a small amount of sediment will start to collect on the inside of the clear plastic extension tubing. How much sediment depends on what I’ve been eating, with orange juice and sugar sodas creating a LOT of sediment. So, if I don’t have any infection concerns, this is a good reminder that it’s time to change the tubing.

Today was a “change tubing” day, which is why I thought to write about it. It’s a simple procedure, not much of an event really, but for one thing.

1 – Decision is made that I’ve got to change tubing, for me this time it was last Wednesday. So, I look at my calendar, to pick a day that I’m going to take a shower (looked like Friday and Sunday this week, but Friday I had to be up and dressed by 9:30, so I wouldn’t be able to sleep past 8 and it was passed over). Sunday is the day, as it often is.

2 – I put a clean washcloth down on my counter top, and discard the old used one. Then I collect all the stuff together, get catheter, legbag, extension, syringes, overnight bag all out of their packaging. I use Jim’s sink as a collection bin for all the crap. It fills a trash bag eventually! I trim the extension tubing to the right length, attach it to the catheter on one end and the legbag on the other. I get one syringe out, keeping it empty. And the other syringe is full of 10 cc of sterile water, which I empty half out of. My bladder can’t tolerate a balloon in it that’s large enough to hold 10 cc of water, 5 cc is enough to do the job.

3 – This is when I take out the old catheter. Foley catheters are constructed so that there’s a tiny tube inside the catheter that water can pass through and be pushed up into a balloon that sits inside your bladder. The full balloon is what keeps the catheter from being able to come out. If you attach an empty syringe to the end of the valve of the catheter, the opposite happens, the water in the catheter will go back into the syringe, and the catheter slips out. I put Kleenex at the opening in my stomach as I do this, in case a bit of urine leaks out, or mucus.

Suprapubic catheter means that I have a hole punched in my stomach about 2 inches below the top of my pubic hairline. A catheter going through this hole goes directly to my bladder, doesn’t go through any intestines or cause any other trouble. It’s probably only a couple of inches, mostly through fat, but I’ve never measured it. Getting a suprapubic catheter was one of the best decisions I ever made. I had been having more and more trouble intermittent cathing myself, and had gotten to where I was using a foley catheter in the more conventional arrangement, but that had several annoying features. The suprapubic location is MUCH easier to clean, to see and change tubing, and makes a sex life a lot easier.

4 – And then I drink a full glass of water! This is important, because the last thing I want is to put in a new catheter, not see any urine coming out and not know if it’s working. Once in a while, believe it or not, a catheter is bad – that it doesn’t really have a good channel for urine to flow through, or in other words – it’s blocked because it was made badly.

5 – Now, time for that shower! Usually when I’m taking a shower, I drape my catheter/tubing/legbag over the arm of the shower seat and let it hang. But on these “change tubing” days, I am free of plastic attached to me! I love that feeling. Every month it’s as if I’ve forgotten what that feels like, to not have tubes attached I mean. I know that for years I intermittent cathed, and I didn’t have a catheter in me all the time, but each month as I take that shower it’s as if it’s the first time in such a long time, and it feels like magic.

6- But I can’t take a long shower, because the longer I go without the catheter the greater the chance of 2 problems occurring. If I go too long, and my bladder gets too much urine on it, it’s spasm and I’ll leak, and then that feeling of being so clean disappears immediately. And as my body goes without a catheter through the punched bladder opening, that opening starts to heal. A blood clot will form. Theoretically the ‘wound’ of a suprapubic catheter is totally reversible. If I pulled the catheter out for good, the punched spot of the bladder and my stomach tissues would heal over, sort of like pierced ears I suppose. Though I have a hole in one ear that I put an earring in about every 5 years, and it has never closed over, so I don’t know if the analogy works.

7 – Out of the shower, insert a new catheter, insert 5 cc of water into the balloon in the catheter and I’m almost back in business. I usually wrap a Kleenex around the joint of the legbag, because when it is new it often leaks, and I tape this down with surgical tape. Lastly I put Neosporin around my hole in my stomach (is this called a stoma? I don’t know) because no matter how clean I seem to do this, that first day with new tubing usually means some mucus dislodged and possible surface infection.

I’m sure this sounds complicated, and there is a lot of detail. And perhaps it sounds a bit disgusting, but overall this is a pretty clean procedure, well, you have to deal with some urine, but it isn’t so bad. It’s the kind of stuff you get used to if you have to. So, what is the one thing that made me want to write?

I love the feeling after a shower. Taking a shower is a lot of work for me because of the extra transfers. I don’t sweat much, and my hair doesn’t really do well with washing daily anyway, so I can manage with showers every other day. Sometimes if I’m not seeing other people on a ‘shower day’ I’ll skip and go 3 days between showers. It’s a balancing act – the work to take a shower on one side, the wonderful feeling after the shower on the other. And on the days I change my tubing the showers are even better. But, ironically those are the days that the good feeling is the most fleeting.

A new catheter, with a new full balloon is mighty irritating to the bladder. And my body reacts with autonomic dysreflexia (AD), which causes my blood pressure to go up, and makes me start sweating above the level of injury - a cold clammy kind of sweat. AD is a reaction by the backup system of your nervous system, when the spinal cord is cut, and normal sensations cannot be carried to the brain in the usual way. The worst AD I ever had was while giving birth to David, but I can get it with full bladder or bowels, broken bones, burns, gas or nuts passing through my digestive system. And I get it in a very mild form, when I’m feeling my cleanest, after changing my tubing, and it irritates me every time. It’s one of those ironies I have never really gotten used to.