Long term catheter use

As I’ve had my flippin’ catheter in me for six months, I thought I would jot down a few thoughts.  Besides, my blog gets quite a few hits on this post written two weeks after I first had a catheter.  There isn’t very much on the web about long term catheter use through personal experience, virtually everything is medically orientated and doesn’t describe what it actually means for the individual.

You can see in the above photo what an indwelling catheter is.  The balloon is inflated with sterile water once correctly positioned in the bladder.  The little green band is where the syringe is connected and this is alongside the connecting piece where a leg bag, night bag or tap can be fitted.

The reason why I have this peculiar tube inside me is to drain urine from my bladder.  This is because of an enlarged prostate.  It performs its task well, most of the time.  I would be in an unimaginable situation without it.

So although it performs a much-needed function, it has been difficult and uncomfortable at times to manage:

• When I first had it, I was shown how to change night time and day bags.  Nobody said anything about the emotional aspect of having this tube in me and how it would make me feel.  It’s a strange feeling having the catheter inside me which a) I need and b) wouldn’t be able to remove it as only a nurse can do this.
• Urinary Tract Infection. Currently I’m on my second UTI and apparently this is quite common.  My symptoms were feeling very cold and shivery for no reason.  Then I started to ache all over.  I went to the Doctor’s surgery and the receptionist initially said she could squeeze me into an extra appointment with the nurse.  Seconds later the receptionist changed her mind and suggested a Doctor and within a minute the Doctor was calling me over the tannoy.   After a brief conversation the Doctor tested a sample of urine.  First he said there was blood in my urine but not to worry about that.  Secondly, looking more closely at his dipstick, he confirmed I had an infection.  Antibiotics were prescribed and now, 36 hours later I can tell they’re starting to work. Phew, I was feeling awful.
• Blockages.  I have had maybe 4 or 5 blockages where the catheter has just become gunged up with bits of debris.  I guess the debris, whatever it is, would normally be passed out without us even knowing.  Each time the District Nurse has come straightaway, recognising it is potentially an emergency situation developing.  Once I was almost at the point of dialling 999 but luckily the nurse came in time (gridlocked traffic apparently).
• Bladder wash.  One time when I was having it changed, the nurse suggested a bladder wash might prevent blockages in the future.  Now I had no idea what that was; never heard of it.  After 3 weeks of to-ing and fro-ing the Doctor and District Nurse agreed on what was needed and then it was supplied.  I was told I couldn’t do it myself, I had to be shown what to do.  Waiting for this took even more time and when I was eventually shown how to use it, I couldn’t believe how simple it was!  The bladder wash is, it appears, good at dissolving some of the debris which would eventually cause a blockage.
• Cycling.  This has been problematic.  Cycling is painful, or even agony owing to the tube running through my urethra up to my bladder.  I have tried different kinds of saddle, all have proved unsuitable.  I have wondered whether a recumbent cycle might be a solution with a different seating arrangement.  The question what what to do with a drainage bag would be problematic.  Having a catheter and riding a bicycle might be easier for women.
• Running has been my preferred means of keeping fit for the last few years and this has been a little easier with a catheter.  I was able to obtain a little tap which when closed allowed the leg bag to be disconnected, this is fine for 30-45 minutes.  I have suffered from some chaffing where the tube rubs against me and sometimes this has been a little painful.  A little bit of KY jelly can help a little.
• Being intimate you’ll just have to take my word for it, having a catheter is a huge impairment.
• Driving long distances did prove difficult first of all, with a leg bag holding only 500ml.  A solution is to connect a 2L night bag.  Just remember to disconnect the bag before getting out of the car.  It brings a new meaning to the expression of “a ball and chain”.
• Leakages yes I’ve had a few and I expect most other people will have experienced this.  A real pain in the neck.  While I was working, I made sure I had a spare underwear and trousers in my car in case they were needed.  The most common leakage is where the tube goes into the leg bag, just not always made very well.  Othertimes the tap might not have closed properly.
• Spasms. I occasionally get the urge to pee, except I can’t.  I think this is my body saying “what is this inside me?  Gotta get rid of it”.

Hot news!

As I have been waiting for a HoLEP operation for 6 months and therefore passed the 18 week NHS target time, I decided to submit a formal complaint to the hospital about the lengthy wait.  I also complained about the poor levels of communication and the fact I’d been taken off the waiting list (while cancer was investigated and discounted) and never put back on the list.

Within two days I had a phone call from the hospital to say the complaint had been discussed with the surgeon and I was being offered a cancellation appointment.  So I need to report to the surgical department at 7:00am on 6th November.

When I had the phone call, I stressed that I would still like a written response as I had exercised my right to make a formal complaint.  This was agreed without any problem.

I have never submitted a formal complaint before.  I took care to point out the positive aspects of my care and to be specific about what I was complaining about.  I also listed the points which I wanted the hospital to address or at least consider in the wider context of how they communicate with patients.  I also tried to combine putting across why I wanted to complain and also describing how things are from the patient’s perspective.  It seems to have worked.

So the end of this catheter is in sight hopefully.  I am told, however, I may not return to normal but we’ll just have to wait and see.