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Hello everyone and many thanks to Ken for help with my WordPress glitches. I am Christina and I live in the UK. I am desperately hoping that someone here can help me.
On 25th July I had a R hemicolectomy for colon cancer during which op. a catheter was routinely inserted. The first attempt to remove it post-op failed, as I expected, because I am inhibited in ‘performing’ unless at home. I arranged for a second trial without catheter under the local community nursing service a week after I came home, but by evening realised that I had failed again – not having passed an adequate amount of urine. I telephoned for the district night nursing service to send a nurse to recatheterise me again and arrange for another trial without catheter ASAP.
Tragically for me, the idiot on the line decided in his ignorance that I needed an ambulance to take me to a hospital instead. Thirteen days after a major op. alone, weak, and still on morphine, my protests were in vain. I was now in the clutches of a National Health Service which, in my part of the UK, has collapsed and is totally unfit for purpose.
I was recatheterised in the first hospital I was taken to, which was fair enough, but then, instead of being taken home, I was loaded into another ambulance and carted off to another hospital ‘with a bigger urology department’. Useless to protest that I had a temporary catheter, not a urological condition, but at last there appeared a doctor who knew his stuff, muttered about fools and waste of NHS resources and ordered an ambulance to take me home without further ado.
However I was now sitting in an A&E department that had recently been heavily criticised for its performance and told to improve, or else. Weak and distressed after my 9-hour ordeal since leaving home, I fainted when I got to my feet, and fell, fracturing my R hip, requiring hip replacement surgery, and also sustained a distal radial fracture (wrist).
So here I am, more than 4 months on, still with the catheter extremely painfully in place. I learned to self-catheterise a few years ago after a wrong diagnosis of the cause of several UTIs, but I cannot do it with my broken wrist, and, in any case, it is excruciatingly painful and I never managed to do it more than once a week for a short time. I am very difficult to catheterise. Doctors and nurses struggle, while I do my best not to scream, and I can’t face the thought of living like this. It is not just the pain of changing the catheter – it hurts and abrades me all the time when sitting and walking, and the urinary nurse who is supposedly doing my trials without has not been near me for a month, presumably because of the difficulty she has, even after 30 years experience, and the pain she inflicts.
So, can anyone advise me. Is it possible to go without a catheter after it has been in so long? Should I try to find a good urologist, and would a urologist take on what should have been a routine matter? I really can’t face this for much longer
Christina,
I’m sorry to hear about your ordeal, it sounds like you’ve been through hell.I would strongly advise seeing a urologist for help. You need to find out why a catheter is needed in the first place. Is it because of a stricture from the cancer treatment, or is it neurogenic, where the nerves no longer function properly? A decent urologist will be able to find out.
As far as how long your bladder will work after having a catheter, I can’t give you an absolute certain answer, but I can assure you that it’s a long time. Many people with strictures deal with catheters for many months or even years before their surgery, and their bladder function returns to normal. I had a catheter for over six months, and my bladder was normal after only a few weeks of being used again.
Did they ever tell you the reason for your catheter?
Clayton
Hello Clayton, and many thanks for your helpful reply. I will take your advice and look for a urologist this week. I have been hesitating because my experiences have weakened me considerably, and I know I could not face more surgery.
The catheter is routinely placed here for abdominal surgery such as mine, or for long ops. so that the bladder won’t open on the operating table, and it is usually removed in one or more tests – trials without catheter – before the patient leaves hospital. I have heard that the bladder loses tone when a catheter is in place for too long, and it is unable to empty itself.
A couple of years ago I had a string of painful UTIs and eventually I was unable to pass urine and was rushed off to hospital for emergency catheterisation. It was in for 10 days and then I had a cystoscopy under GA. The surgeon filled my bladder with water before I was woken up, and the pain was severe, but it worked, and the bladder just let go all over the recovery trolley!
The cystoscopy revealed nothing amiss, and there was no stricture according to my consultant. His diagnosis was that I had a large, floppy bladder and retention of urine causing the UTIs, and I was referred on to learn how to self-cath.OUCH!! Fortunately we found that I wasn’t in retention. The UTIs, it seemed, were caused, as I thought, by self-infection via the pads I have had to wear for faecal incontinence for 30 years since I had a hysterectomy. I find this only a relatively minor inconvenience, compared to the sheer hellish pain and the inconvenience of the urinary catheter.
In view of this additional info, do you still think I might be able to get rid of catheter?your experience was dreadful, and I’m o glad it ended well for you.
Christina
Christina,
Fortunately, the bladder doesn’t suffer permanently from inactivity. Even people that are in extended comas can regain their bladder function with time. It does shrink to some degree, but like I said, mine stretched back out within weeks of being used again.Normally, bladder function is completely lost for one of three reasons… The first is a stricture or other obstruction, another is because of nerve damage that won’t allow the muscles to relax in order to open the urethra, and the third is damage to the muscles surrounding the bladder itself. When these muscles become either too rigid or too stretched out, they can have trouble squeezing the urine out.
Aside from traumatic injury, all of these usually have symptoms that appear before things stop working completely. A urologist can do a neurological workup to see if your bladder is working normally, or at least should be.
Obviously I can’t give you a definitive answer one way or the other, since I’m not a urologist, or a doctor for that matter, but until a specialist runs the tests, I wouldn’t assume anything.
I hope you find an answer, and let us know what you find out.
Clayton
As Clayton advised I found a good urologist with female urology as one of his areas of special interest. I made an appointment in a private hospital here and saw him today. I felt very much at ease with him, and after listening attentively to my account of my complete history he recommended that I go into the hospital for an overnight stay for another TWOC test. With the peace and relaxation of an en suite room, with help at hand if necessary, I should have a much better chance of urinating successfully. If this doesn’t happen by next day, he proposes inserting a suprapubic catheter there and then, and discharging me next day.
I was hoping for an overnight stay in hospital like this, and was very pleased that he suggested it. However the idea of an open hole in the abdomen is daunting, and I should be grateful for any advice/voice of experience/comments on this, bearing in mind that I am a devout coward! I am booked in for January 10th, so help!
Christina,
It sounds like you’re on the right track to find out what’s going on, and it also sounds like your doctor is being upfront about things, which is actually a good thing, even if we don’t always like what they’re telling us.I had a suprapubic catheter for about five to six months. It’s not exactly fun, but you do get used to them eventually, and some of the biggest drawbacks can be treated. The area is obviously tender at first, but that goes away over time. It can also weep a fluid out with some people, as it did with me. This often lessens with time, but it can take a year or two to start improving. Catheter changes can be painful or painless, often depending on who is doing it. Nurses are usually better than doctors. They’ll give you a medication for bladder spasms, and you should always take it before a change.
Hopefully you won’t need to go that route, but if you do, it’s not the end of the world. A lot of people live with suprapubic catheters to make it easier to live a normal life. Activities like hiking, swimming, sex, etc, are difficult with a urethral, but a suprapubic makes them possible.
Let me know if you have any other questions.
Clayton
Hi Christina,
Sorry for this late reply but I have only just discovered this site and forum. I too had terrible pain and trouble with my first two catheters (12 weeks for the first, and 6 days for the second before it blocked and had to be removed).I then went back to pads for about six months while the Urology department arranged further tests (I’m in the UK too). To cut to the chase the Cystometrogramme?? test showed I had no sensation or control of my bladder but it didn’t empty until the pressure got far too high and the consultant was worried about kidney damage etc. He recommended a supa-pubic catheter as a permanent solution but because of my medical history there were more than usual risks. Meanwhile I had read up a lot of information on various catheters and found that there was a type called “Hydrogel Coated Latex” which is much more flexible and softer than the “All Silicone” catheters I had previously had. I also learnt about Suby G bladder wash to prevent catheter blocking and cranberry tablets which might help prevent UTIs. I asked the consultant if I could try again with a Foley catheter but using the Hydrogel-Coated Latex type. He agreed and in view of the difficulties previously with chronic catheter pain arranged for the catheter to be fitted in the Urology department breathing Entenox gas to avoid the trauma I had previously endured. – I had had polio as a child and the pain of previous catheter insertions had caused violent spasms in my legs while fitting which made it harder for everyone.
These softer Foley catheters stay in for just as long (13 weeks) so only 4 changes each year but have virtually eliminated the pain I previously experienced. I now honestly forget I have a catheter in place for most of the day.
The Suby G bladder flushes are painless and seem to have prevented further blockages. Now coming up to 12 weeks on my 5th catheter and not worried about having it changed a week on Friday. What a difference from the first one !
If I can help with any more details, just ask.
MarkHello Mark,
Many thanks for resurrecting this topic. Your post has reminded me that my thanks are long overdue to Clayton for his advice when a post-op urinary catheter was causing me much pain and distress. My experience pales into insignificance compared with yours, and I am so happy for you that you have reached a stage where you can sound so up-beat after such horrendous experiences. Good luck for the future.
As for me, I followed the advice that Clayton gave me on this excellent forum and went to a private consultant urologist. I asked if I could be admitted to a private hospital overnight to do another trial without catheter in the comfort of a private room with help at hand if needed. When he came back to check on me in the morning I had only about 200ml retained in the bladder. He still recommended a suprapubic catheter, but when I expressed my squeamishness and general cowardice he sent me to have my kidney function checked to see if my bladder’s habits were impacting on the kidneys. They haven’t so far, so we have agreed that I will see how it goes but will go back for a suprapubic catheter if I have further problems such as recurrent UTI’s.
Unfortunately, though, I have not recovered my health and nor can I walk unaided or use my R hand following my fall just after my cancer op. but I would have been much worse if I still had to cope with the pain of that catheter!
Hi Christina, Many thanks for the prompt reply and details of the success you are having. Long may it continue and hopefully for ever.
If you do get to the stage of needing a catheter again it would be worth discussing having a trial with a uretheral Hydrogel-coated latex one before having to have an operation to fit a super-pubic. Certainly the difference for me between Hydrogel-coated and the original All-silicone catheter has been enormous. They are just so much softer and flexible, unlike the stiffer all-silicone type.
I think the consultant arranging for the catheter changes to be done with me “high” on Entenox gas also helps and certainly takes away my fear of the catheter changes, makes it easier for the staff, and seems to cause less trauma to the water pipe so that I am discomfort-free within a few hours of the change. Allowing 5-10 minutes for the Lidocaine gel to anaesthetise fully also seems important.
Delighted you don’t seem to need a catheter at all at present. Long may it continue!
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