suprapubic catheter advice please.
Posted , 25 users are following.
Hello, I was wondering if anyone with or who has had a suprapubic catheter Could give me some advice and do's and don't's, tips, etc etc.
I will be having one fitted on Tuesday after having this urethral catheter removed, been 29 days since this urethral one was fitted and I requested the urologist a week and a bit ago to convert me as this one was driving me mad with the infections, discomfort, physical restrictions, internal bleeding and bladder spasms, etc etc.
I requested general anaesthetic as I am quite an anxious person and would probably panic if awake.
Any advice from personal experience / medical training is appreciated. Thanks
3 likes, 113 replies
ollie64
Edited
I woke up at 2am in a recovery room, instantly agonising pain in my abs where incision was, minimum 8/10 pain, was given something to ease the pain, probably morphine or codeine, I think into the cannula so probably morphine, not sure as I was sort of in and out of consciousness, and able to hear the nurse asking me questions and talking but I was unable to open my eyes or say anything coherent. I came around after about 20 minutes, and was checked over, then taken to extended stay area at about 2:40pm.
I tried napping but was too much going on and a person next to me constantly force coughing, so I played my 3ds which I took, had some dinner at about 5:30. Was visited by my mum at 6:30 where the urologist then came round to see me about 7:45 where we talked about some details such as how it took extra time as I bled a more than usual amount and my body kept tensing up and slowing progress by countering pressure of water being pumped in and tensing abdominal wall which they had to wait until I relaxed to continue as they thought I had become aware, maybe I did, I don't remember though, he said they left the urethral catheter in place and used that to fill the bladder, and just inserted the suprapubic with my bladder being very bloated and I think he said they didn't need internal view, Im not sure if they inserted the needle obturator blindly or with ultrasound.
I have a double urethrogram dye test due in a few weeks or so to assess the stricture, and he is organising for me to talk with the person running the OPEN trial where they are recruiting 500 men with recurrent bulbar strictures from NHS hospitals to undergo randomisation of either repeat urethrotomy or a urethroplasty and follow progress closely to see which is clinically and cost effective. I cannot make a decision as it's too much of a dilemma for me, repeat urethrotomy will most likely fail again but plasty has a 90% permanent sucess rate but has some cringeable possible side effects such as loss of penis feeling, erectile dysfunction and penis shortening, which at 22 years old don't really want to risk haha.
I was kept overnight to make sure there was no delayed bleeding and that pain was managed, I had 1g of paracetamol every few hours which took the edge off. I was kept awake most of the night from discomfort and Mr cough and Mr snore fart across from me, i got up at about 9am and was visited by the other urologist who was involved and his secretary / assistant, I then waited around to be discharged which was 4:30pm, was given more night bags and gauzemlpads, some paracetamol to last a week or so, a weeks sick note, and a prescription for buscopan (anti-spasmodic to ease bladder spasms.
Have been given a couple tap valves which I can use if I don't want a leg bag, I just allow bladder to fill then open valve over a toilet, slow to empty and some discomfort when it stops, it can't fully empty but does the majority.
Some still comes out normally so pads are needed.
I am to either wear this for 2-4 months, depending on which procedure I'm chosen for, ideas told urethrotomy would take about 3-4 weeks to get in for as he could do it himself again, but plasty would take a few months at least as there is only a dozen specialised surgeons who do them, 3 of which do 50% of them, they do 1-2 a week, and only leeds or Sheffield are closest available places for that as york isn't equipped / has the specialists available.
District nurse scheduled to come visit tomorrow, and order some more things like bags.
Will update with progress or if anyone wants to ask a question.
Pain isn't so bad after having painkillers, got some 15mg codeine from doctors repeat prescription and some voltarol in cupboard.
These are supposed to be superior to conventional catheters, yeah the insertion is far worse, can be done under local usually but I was given general as I'd be too panicky and fidgety on the table and would of caused problems, but after things settle down suprapubics are supposed to be more comfortable, are hideable with the valve ( valve can be used for urethral too) and also leaves the genitals free, urethral ones also cause damage over time to tube and bladder neck, I had a couple infections with urethral one even with drinking plenty of water and cleaning the area alot, and it caused problems with sleep and work, and was worse when it pulled,
And acquisition of erections were..... Painful.
I should of had a suprapubic put in when I was at A&E in September but the doctor on duty wanted to try normal one and forced it through the restriction, causing it to become unstable, which requires it to re-stabilise before proceeding with tests or procedures, I should of demanded suprapubic but with 1.4litres in bladder I just wanted the pain to end.
Sorry for wall of text
Hope this helps anyone who is going to have one.
ollie64
Posted
ollie64
Posted
I rang the doctors on Monday and got a call back and the doctor prescribed a box of 100 30mg codeine 500mg paracetamol, to take 2 at a time for up for 4x a day, at least 4 hour spaces between, a special anti spasmodic called tolterodine, these things DO work, I have only had 3 small spasms since Monday evening. If you are getting a SPC you MUST ask for these, unless you allergic. And also nitrofurantoin for the infection which seem to be helping.
These things cause drowsiness and tiredness though.
The hospital won't automatically give you these things, they have to be prescribed / asked for. I had to practice demand them.
Hope this helps anyone who's having a SPC put in
ollie64
Posted
had to stop taking the tolterodine after a week as severe heart and breathing side effects were happening, tried solifenacin and mirabegron but they dont work for me, so for the last 5 weeks iv been having to endure the bladder spasms, backpressure to kidneys making them hurt, and sore stoma ( tunnel which catheter goes through belly) which hurts at any tube movement, need to take 30-60mg codeine 500-1000 mg paracetamol up to 4x a day to bear the pain involved in bladder spasms, they are still a 5-7/10 on pain scale, and they can come on suddenly or always come on whenever I get the ordinary signal, i think the bladder muscles have become damaged now too because of the straining during the spasms. The spasms were 8-9/10 for first week or two after op due to abs being super sore from being cut through, I was on my knees every time and even throwing up from the abdominals assisting so much.
for comparison i would class being kicked in crown jewels or a strong migraine or a very bad leg cramp a 7-8 /10.
gotten too much and had to recently take a sick note for a number of weeks until I have the op, op should of been 2 weeks ago as i was told id been put down as an urgent and my normal urologist said it would take about 3 weeks for repeat urethrotomy after being out on waiting list, that was 5 weeks ago and there's still nothing organised, taking longer as an urgent case than it did as a none urgent for same procedure, how that works i don't know, but i suppose all I can do is wait.
Most people find SPCs easier, I find it harder than urethral but when I had my old urethral one after about 2 weeks i was getting 150-200ml of pure blood intermittently nearly every day so it had to go.
I hope I haven't scared anyone who has need of a SPC, most cases usually go ok, i must be one of the few who has problems.
alan44099 ollie64
Edited
I was first rushed into A&E as an Emergency, my bladder would not empty.
Extreme pain (I mean extreme). Three hours later I was given a SPC and the pain went straight away as the bladder emptied.
My stricture was caused by a large build up of scar tissue afterr an operation for protate cancer went wrong and I got a severe infection.
I doubt if my bladder had been empting properly for a couple of years.
I had another operation one month later to try to relieve the stricture but this was not possible. I was told then that I would need another operation to remove 2 large bladder stones (by open surgery)
l was told my SPC would now remain for life.
My experience has been quite testing. I have spent quite a time in hospital and often been in considerable pain. I have to ensure that I get the right antibiotics when I am in hospital and also thye right painkillers as I am alergic to so many things.
Post this, once the wound has healed from the open surgery I have to take things easy. Its all in thye mind and the head and adjusting to life with an SPC takes time and considerably psycological effort.
I have to clean the storma twice a day and make sure the SPC is not rubiing. This is key to management. Getting used to leg bags, night bags and flip flos is all part of the recovery. Good news is that if you can get to grips with this there is no reason why you cannot lead a normal life. You may even conclude that having a SPC is far better than suffering with incontinence and spasms. This is more debilitating.
Best advice is always keep positive and take your time. Clock watching only leads to depression and frustration.
If you can general keep fit and healthy then you'll be fine. Always remember not to feel sorry for yourself. You will always find someone in a much worse position than you!!
ollie64 alan44099
Posted
I can empathise on the acute urine retention pain, it's one of the top 5 if not 3 most painful things a man can experience, it took a few hours to get sorted too, they didn't exactly rush me, i called a GP, then 111, both got no where with, so I rang 999, took 25 mins for a car ambulance to come, and the woman had a demeanour like I was a hypercondriac and over reacting, didn't rush in the slightest, even tried getting me to get a lift or a taxi, a taxi wouldnt take me because they'd be liable, acute retention is a genuine emergency, taxis don't want that responsibility ,
If left untreated kidneys fail first then bladder and / or ureters (tubes from kidney to bladder) ruptures in less than 24 hours, probably less than 12, and urine leaks into cavities and causes mass infection.
so she reluctantly moved loads of junk off the passenger seat onto the already covered back seats, and gave me a slow lift to hospital, and at that point I already had 770ml, took another 3 hours before getting the cath in on a 2nd attempt. I think there was no trained staff member available to put a SPC in so they were waiting, although I eventually broke down before they had found a slot in theatre / trained person for me so the doc on the floor forced a ordinary 4mm catheter through it as was taking too long to get a theatre slot, plus they wanted to do it under general anaesthetic which meant finding all my statsand info from last time.
but he got that one in and 1.4 litres drained straight away, then another few hundred over following few minutes, i was looking like i was 4 months pregnant in my lower abdoman haha. If it ever happens again I'll put my foot down, and demand I'm seen to asap and I'll know what to say and do, and not to allow them to even attempt urethral and just go straight for SPC.
Afrerwards They should have taken me to theatre anyway and just swapped it out rather than cancel the theatre slot, was also a cock up when i went in a few weeks later to have it change anyway, they were going to force a 7mm rigid scope through the stricture to pump water in and watch the catheter come through the abdoman, would of been pointless as thered of been a 7mm hole to pee through, might aswell of done a urethrotomy haha. I only agreed to 5.3 mm flexi scope, as the hole in stricture from forced catheter was 4mm.
Iv summarised everything that's gone on in different posts if they interest you.
How come you aren't eligible for surgery to fix the stricture? a urethrotomy is generally a low risk op, it's just a small internal cut, and then onto a self dilation regime like I'm on now, which is quite easy after a few weeks, and it is statisticly proven to give patients far longer stricture free time until recurrence. A urethroplasty is quite drastic and can carries risks but if far more successful . Also urethrotomy can be done under regional anaesthetic if general is not a good option.
I know how you feel with stones too, i had them at 15, several years ago, mine were removed via rigid scope, which is what I suspect caused my stricture, as there was considerable bleeding for weeks after that.
I know what you mean with spending alot of time in hospital, 2 operations and the acute retention ordeal could have been avoided if i was put on the self dilation after the first urethrotomy in may, my urologist at the time decided against it based on a personal opinion and not the statistical logical choice. I'm juggling with the prospect of putting a claim in for the 1000 or so that I have lost due to the sick time needed and the incapacitation and pain and having to be 95% housebound for 4 months on strong painkillers, could have been avoided. Not sure what to do.
I hope your surgery and spc goes ok. If you get bladder contractions or spasms there's a array of anti spasmodics, i found tolterodine worked but had nasty side effects like making my resting heart while laid in bed rate go from 75 average up to 112 a minute, and making it go over 160 when just going upstairs, also made me short breathed.
robert02169 alan44099
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andy55223 ollie64
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Did you get leg swelling a few weeks after SPC? My mum had that one that went inside and her legs were fine. weeks after having SPC she got leg swelling which wont go. same amount of water tablets as before. even a Nurse has said her legs weren't like that before. Thanks
peter43410 ollie64
Posted
I too have a suprapubic catheter and also an ileostomy right next to the opening. I deal with constant UTI's and other infections. Always on one or two antibiotics which I feel are the worse things in the world for your body. The pain I experience from this catheter is unbelieveable. It is almost constant and trying to move it around does nothing but cause me more pain. I hope you got some relief from this problem. Let me know if anything is working for you presently. Signed Peter in pain.....
JT465 ollie64
Edited
I've had an SP Cath for 5 months now. So much better than a Foley cath. No infections to date and went swimming in different lakes several times this summer with no precautions. Clean normally with soap and water when showering. Due to calcium build up, I flush the tube about once a month with sterile water and a large plastic syringe the urologist gave me. Tape (anchor) the tube to your skin near where it comes out of your stomach/bladder. That will keep your leg bag from pulling on the tube insertion site and make things much more comfortable for you. Change this tape daily after showering. Don't worry about the SP cath, it is a world better than the Foley. Good luck !
robert02169 JT465
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robert02169 JT465
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reyan ollie64
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I've gone through urethrotomy last monday, before that doc put SFC in my bladder for 3 days to recovers my internal wounds and after the 3 days I've gone through urethrotomy. Now I've Foley cath(indwelling cath) for a week.
I want to ask you that, did your doctor done stitches after removing SFC?
Mine is little hole there.
Pardon my English :p
Bess_15 ollie64
Posted
Hello. I am new to this site. I am a paraplegic and wheelchair. This is only recent over the last few months. I was catheterising myself prior to this. Now I am using pads as I can't onto the commode myself. My nurse suggested the supra pubic catheter to me. What I want to know is anything from people who have them and how they find it. I have gained a lot of weight this past year and I wonder if it would hinder me because of all my weight. Any help is appreciated. Thank you
robert02169 Bess_15
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Bess_15 robert02169
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robert02169 Bess_15
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Bess_15 robert02169
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robert02169 Bess_15
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hilaryW Bess_15
Posted
Hi Bess,
I too am a paraplegic this happen in November last year so very new to me too. I had my suprapubic put in a week ago which was planned but had been in retention 3 days before (dont ever want that again).
Apart from some discomfort when trying to turn over at night and having antibiotics which I hate its going OK.
Look on every day as a new start there will be things you are unable to do but become inventive and you will get round most things as I have. Was discharged 5 weeks ago had a few falls when trying to be too clever but you learn by them. Been to spinal games 2 weeks ago and there are lots of things you can get involved in.
Don't worry about the weight gain they pop it at your pubic line and once everything is stable you can have a tap on so no leg back all the time.
Another piece of advice buy jeans etc a size bigger cuz they slide down your back in the chair and also nothing visable.
Good luck hope this helps.
Hilary
robert02169 hilaryW
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