suprapubic catheter advice please.

Update: have it inserted now, arrived at 7am yesterday morning, was first into waiting room, I was last on the list of 4 people being seen by the urologist, I am an anxious person and can have panic attacks so I was given a sedative to calm me and make me sleepy at 9am, had some Emma cream I requested on my hands, fitted with a cannula, was given a infusion of novo7 as I have factor 7 deficiency, this made me go very dizzy for about 10 minutes, went back to waiting room, then saw the 2 urologists and anaesthetist, they said they were going tubule a flexible cystoscope to fill the bladder and also view the catheter come through, I already had a urethral catheter in at the time ( was removed this morning), I agreed as the flexible one is about 5.5mm wide ( and the catheter which was rammed through the completley sealed stricture had punched a 4mm hole through the restriction when it was inserted on september 11th when I had to go into A&E from acute retention) , so I thought it wouldn't have much trouble getting past, so I agreed and gave consent signature, had a talk with anaesthetist, went back to waiting room and had a little nap in a comfy armchair, then at about 11 they brought a wheelchair and wheeled me down to a waiting room for theatre ( they were still busy in the theatre I was to go in) then about 20 mins later they wheeled me into theatre, the sedative had mostly worn off so I started to panic a bit, as I hate general anaesthetic, laid on the bed, said to the anaesthetist that I wanted to be oblivious as to when it was going in, because if they said count to ten I'd of known it was in and of automatically braced for it and resisted / flailed around, had a talk with them and some powerful anti biotic which made me dizzy, the theatre nurse said they were doing a rigid cystoscopy to view the inside....I instantly said "what??!!! I was told flexible, the rigid one will cause severe damage as it's like 7mm wide and would tear the stricture apart, she went into the operating room and got the urologist, he said they needed to do it for safety, and would try the flexible one but if that couldn't get through they'd have to use the rigid one. They have to fill the bladder up to like a litre for it to push the bowel / intestine out the way and make it easier to get to bladder. I said ok, and he then said he would look after me and not to worry then went back into other room, this is where my memory cuts out, I don't remember the anaesthetic going in, I was told today it can have a deletion effect where it can sort of delete memories a few minutes prior to it taking effect. 

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.

Another update 9 days post op: things are settling down, becoming easier to live with, the thursday Friday saterday Sunday after the op were hell, every 5-10 mins I was getting bladder spasms and abdominal contractions which tensed their most humanly possible amount to try force out the balloon, these contractions made me wrench over / drop to my knees, leak out the normal tube, throw up, even void the bowel :S with the sheer force of the abdominals tensing up to assist the bladder to contract,  buscopan doesn't do a damp thing to help these, and paracetamol and low codeine helped as much as using a toothpick to mine for ore, I think I even re tore an old ab tear from a year ago.

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

I have had a supra pubic catheter for 3 months.

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!!

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.....

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 !

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

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