My Catheter Story
Posted , 4 users are following.
Here’s my NHS story and not a pleasant one.
I was a fit active man aged 67 when I first noticed pain when I passed urine. Gradually, this got worse and I was diagnosed with a swollen prostate. No problem, tamsulosin stopped the pain and I went back to a normal urine flow. That lasted just over a year.
For a few weeks before my bladder finally closed I noticed I was putting on weight, getting flabby around the waist, chest and my face. Then one night the pain came back with a vengeance, the screaming sort of pain. The problem as I later found out was not that I had a swollen prostate, but that it had closed completely and my stomach began to swell like a balloon. I managed to last till morning and then called 999 who told me that as I could still stand up I wasn’t an emergency! I managed to find a neighbour who took me to a large University hospital in the midlands twenty miles away.
I didn’t get through A&E, they knew what it was and I went straight onto an observation ward where I had my first catheter fitted and drained something like two night bags of blood and urine from my bladder. Instant relief. They kept me in overnight, but by morning I was passing blood, had a temperature and my kidneys were failing. I ended up on a specialist ward for a week.
Emergency over I was discharged with a catheter (16F) and told I had to come back soon for a cystoscopy. Two weeks later I got a nice letter from the NHS telling my it wouldn’t hurt and that I would experience only a little ‘discomfort’ and would get a local anaesthetic. For those of you waiting for this procedure insist on a spinal injection or ketamine because it is agonising torture and I chose my words carefully there. I held my hand over my mouth and screamed for two to three minutes before I told them to stop hurting me. The only ‘anaesthetic’ I got was a nurse telling me to breathe deeply and relax. Think of having the catheter put in and multiply the pain by ten!
The recommended catheter change I’m told is two to three months. Yet because of the blood clots and gunge from my kidney failure remaining in my bladder, mine is changed every two to three weeks and I can tell the tube is getting clogged up by the stages of pain I go through leading up to it not working again.
I’m on the waiting list for a TURP operation which is not considered urgent. Here’s the problem which I’m trying to get through to seemingly deaf consultant ears. My elderly father died over twenty years ago of kidney failure. My twin brother has been on a dialysis machine for six years – kidney failure. Genetics? I wonder how long my kidneys can take this abuse and I don’t want to end up like my twin brother on a dialsis machine for life when a simple emergency TURP operation could prevent that.
I’m one of life’s forunates who rarely become ill so hospitals are alien to me, but I was shocked by the state of the NHS. If it’s an emergency they’re good, but once the emergency is over you’re quickly shown the door and left to it. Fortunately, I have a good GP and she told me not to bother with the district nurses, but to go to the urology department when the tube gets clogged up again in a few weeks where I can speak to a specialist urologist and keep hammering home that it’s an emergency because otherwise they’ll just treat it like a swollen prostate and I’ll wait forevever for an operation. Here’s hoping my kidneys don’t fail completely before then!
0 likes, 9 replies
hank1953 JohnVit
Posted
You may want to do a bladder flush or washout by yourself occasionally to make sure that your catheter is not clogged. As long as your catheter is not clogged, your kidney should be protected, I think. Hank
JohnVit
Posted
Every two or three weeks my catheter is changed and I get a bladder flush. The particles in my bladder are too big to flush out, hence why the catheter gets clogged up again so quickly.
On my medical records I’ve supposedly had a cystoscopy, but in reality it was never completed due to the pain. My records also show no medication, but that’s only because the medication doesn’t work anymore and my bladder is completely closed.
So, according to my medical records everything is fine, but in reality I’m often in extreme pain and my bladder is fully closed and still full of ‘debris’ from the initial closure months ago and any damage done which they can’t see on the monitor because my bladder looks like what they referred to as a ‘snowstorm.’
Tomorrow I go for Kidney and liver blood tests which my GP suggested, but it really is an emergency and I can’t seem to make them understand that.
TKM JohnVit
Posted
Have you tried intermittent catheterization? There are some discussions on this website about it. They were mostly started by a person named Jim James. You might be able to get insurance to pay for the catheters, if not get the re-useable type. You can wash them after every use and use them again. Many people on this website do it including myself for 6 years.
JohnVit TKM
Edited
Thanks for your reply TKM.
I’ve not heard of ‘intemittent catherization’, but I doubt that would work. It’s not just a swollen prostate, my bladder is completely closed and the catheter has to be forced in. The pain of even putting in or taking out a catheter tube is agonizing. Not something I could do myself and I dread having it done each time. Yet eventually, the pain from the chronic water retention gets troo much and so it needs to be done.
The cost of catheter bags isn’t a problem as I’m from the UK and all medicine and surgery procedures are free. It’s waiting in a queue possibly for years that is the problem, because if it’s not regarded as an emergency you join a long waiting list. You have to fight to get anything done here, so it’s a matter of continually having a go at them to try to make them undertand its an emergency and not just a swollen prostate.
TKM JohnVit
Posted
It sounds like your having Foley catheters installed at a hospital. The Foleys they use are usually size 20 and above. If you do self catheterization you would probably use size 12, much easier to insert. There is less problem when you insert it yourself, because you slow down or stop when you feel the slightest pain. When someone else is doing it they don't feel your pain.
nick66592 JohnVit
Edited
Firstly, I am so sorry to hear of your eventful and painful experience. I do hope you are back to normal health very soon.
I started with a mild enlarged prostate about two years ago. I didn't get worried about it and eventually I asked the doctor about a swelling on my penis shaft. Thinking it was cancerous, I had it checked out straight away. Soon after I had an appointment to see a consultant. He ruled out cancer and did not know what the swelling was ( now looking like a liquid filled baggy lump), and referred me to a hand scan (those pregnant women have) , a CT scan (bladder and kidneys) and showing my penis to numerous doctors (and many young female nurses), who were totally baffled. It didn't contain any fluid, couldn't be burst and had no grounds to be there. It didn't hurt when it was squeezed, it didn't reduce in size after a wee, it didn't get any larger, and it seemed to move around the shaft from side to side on its own. In the end they decided on a Cystoscopy. Got an appointment but couldn't get the camera into my urethra as it was too narrow, dangerously narrow, must have an operation type of narrow. So 10 days after the operation (having my catheter removed in the morning), I expect my flow to be streaming and after a few days back to a normal flow. They are still unclear why I have this baggy lump on the shaft of my penis. They've suggested having it cosmetic surgery to remove it. Well at 62, I'm not really worry about how my penis looks, my wife isn't happy with the way it looks but hey, cosmetic surgery looks very painful and certainly very costly.
I cannot fault the NHS in my area, maybe I'm just one of those lucky ones !
JohnVit nick66592
Edited
Yes, I think it’s a postcode lottery and especially in or near the big cities. Taking about swellings, I have the same on my left elbow! A lump that isn’t painful, a sort of spongy feel to it, wobbly, moves around and it’s just sort of … there for no reason. A nurse told me it looked like a cyst. Perhaps that’s what you’ve got?
I couldn’t manage the cystoscopy though, the pain was unbelievable. No anesthetic whatsoever. Boy, did I scream before I told them to stop! I don’t understand why they don’t do the TURP operation on these things instead of waiting and possibly ending up on a dialysis machine for the rest of your life. Is a TURP operation the one you had and did the operation work for you?
I’m 68 and also like you not worried about looks, or performance. At this stage in life a pain free few final years matters more. The care I did have was great, it’s just that unless it’s an emergency you can’t get into hospital in my area. I’m in the midlands.
nick66592 JohnVit
Posted
** Update **
It would seem I have lymphedema. The saggy lump half way down the shaft of Mr Winky.
Very unusual to have it there and apparently there's no cure.
It was suggested that I have cosmetic surgery,that sounds very painful.
So my Catheter could not be removed by the District Nurse. apparently a size 18 which only the hospitals keep in stock !
I took a ride out to the hospital, without an appointment, and believe it or not, they showed me to a vacant room and whipped it out straight away. In and out in less than an hour.
Sometimes it pays to visit the hospital without waiting for an official appointment !
JohnVit nick66592
Edited
I think at our age (not that we’re oldies 😃), do looks and performance matter so much anymore? As long as there’s no pain and incontinence I personally would be more than happy with that.
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I’ve started to experience pain again in only three weeks since my last catheter change (F16) and slightly leaking so I know I’m getting blocked again. Before it turns into agony I’m off to hospital later on this morning to have it changed on the advice of my GP who said I won’t get anywhere having the district nurse continually changing it. I have to try to make the hospital understand it’s an emergency and not just a swollen prostate which they’ve got me down as.
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I was just thinking the other day. There are three males in our family. My father who died 23 years ago at the age of 85, so no surprise there. He died of kidney failure.
My twin brother who has been on kidney dialysis for the past six years, again kidney failure.
That leaves me and my kidneys were already failing a few months ago and I’m left wondering how much more abuse they can take before I go the same way as my brother. Genetics?
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If they won’t treat it as urgent I’ll have to go private. It will drain my savings, but it’s worth it to the constant pain I’m in. I’ve been quoted for a private TURP between 5.5K and 6K.