hi I thought this would be the best place to post…re super public catheter… I am undiagnosed!with unclassified neuro condition under review at present… I have a hypocontractile bladder / neurogenic after a rta many years ago…ISC. started 16 yrs ago…but spasm and closing of the sphincter at bladder during isc became impossible …so I had a urinary diversion just below belly. below belly button in 2002 “mitrofanoff” it worked well for many yrs but the last 3 yrs increased leakage at night and day coupled with hand weakness…and reduced dexterity …the urologyst has suggested a super pubic pubic catheter in march to replace the other…and I didn’t want a permanent urinary catheter…although I have one in now until the op… I would really appreciate any feed back about this both post op and beyond… many thanks em
Hi
My wife had a supra pubic catheter fitted just over a year ago,(prior to that it was just pads ) and like most things there are both negatives/positives - After the settling in period post op and the learning curve for me as carer,overall the system works well. From a user perspective it has to be changed on a frequent basis (normally every 6 weeks) and although a job that district nurses can perform, after a difficult experience, I take my wife to the catheter clinic at the hospital which she has high regard for.There have a been a number of mishaps with the bags/connections/flipflow valves etc but you do learn quickly and which combination of fittings etc works best. It has allowed us the freedom to go out, say for a meal without the need to establish where the toilets are beforehand and to enjoy a meal/travel without several intervals/stops.My wife does not like the equipment etc attached to her leg, and sometimes finds the catheter itself a discomfort, I suspect that this would vary from person to person.
Hope this is of some help
Hi there,
l had my supra-pubic catheter 18yrs ago. And it has been a god-send. At first l had the usual teething problems until l worked out a ‘regime’ that suits me. l have it changed, at home, by district nurses,every 5 weeks - any longer it becomes a bit harder to remove and then causes a bit of trauma to the site.
For the first 10yrs - l had a nurse come who worked for an agency dealing just in SPC’s - and she was brilliant. And she taught the local DN’s.
l too hate the idea of wearing a bag strapped to my leg. And l can assure you - it is not necessary. l can’t use a flip-flow valve as you do need to have some control of your bladder for that. l have a short length catheter [female length] and a direct connection bag 600ml - so virtually no tubing. So no kinking either! l use a ribbon/lace to tie the bag through its loops around my waist. All fits nice and snug inside my tight short style knicks. l can wear shorts/tight jeans/leggings etc without it being obvious. This allows me lots of freedom of movement. No dragging on the catheter site - No unsightly bulge. All comfy and secure.
AND - l stay with the same at night - no connecting to a night bag on a stand. l found that demoralising - lf l do need to empty at night l can empty into a plastic bottle if need be - if l do not feel like getting out of bed. The same when travelling by car - l can easily sort myself out. The tap-end is by my hip - so only needs me to open top button of jeans to enable me to get the tap out for drainage.
There is a good website started by Oxford Uni - its called healthtalkonline.org.chronic illnesses -living with an indwelling catheter. l am on this as l was interviewed.
And SPC is not permanent - ln fact once removed the body starts to close up the hole within 20mins. - So if you don’t get on with it -nothing is lost.
LDN works very well at giving you more control of the bladder - and the new med called Betmiga has had some excellent results as it does not have the ghastly side-effects that the old oxybutinin caused.
l very rarely get a uti - l take every day D-Mannose - which promotes a healthier bladder.
Hope this helps.
Great advice spacejacket
You forgot to mention about driving across muddy fields like a wild woman, with two barking dogs running behind you
Hello em
I had a supra pubic catheter years ago, when I had a op for a prolapsed womb. Female surgeon said I would recover quicker…she was right. You can always count on a woman lol
You’ve been given some excellent advice from columbus and spacejacket. Good luck
Hi, I had an spc fitted last June. Like most things, it takes some getting used to but now, I wouldnt want to be without it.
The wound remains open and it needs to be cleaned every day. I prefer to keep a gauze dressing on mine, as it does ooze a bit of gunge and sometimes blood…but not enough to be a bother…but it is better on a dressing, than staining your underwear.
The tube can get kinked or pulled accidentally and this is something I regularly check for. I dont wear a leg bag, as I wear leggings and it would be uncomfrotable and show. I find the best way for me, is to have a cloth bag on my left hand side, just neatly slipped over the wheelie`s control pad and then the wee bag fits nicely inside, out of site and at an easy place for me to check now and again, if it is getting full.
At night, I remove the day bag (500mls) and replace it with a 2L night bag. Hubby empties it around 11pm and then again around 8am…it is full by then!
So all in all, my spc suits me very well. Before i had it, my life was fraught with utis, retention, huge difficulty in transferring to loos and wetting accidents.
Good luck to your wife if she goes for an spc.
I`m afraid part of your post, I didnt understand, but that doesnt really matter…I knew the jist of your question.
luv Pollx
thanks so much everyone for your advice …it’s been really helpful ESP the little aspects …that the nurses prob won’t tell me…lol I was thinking flip flow valve at times and a bag for others… am in a wheelchair all of the time…but like to wear close fitting tops and jeans etc and leggings too…also want to continue swimming … I will have to stay in over night as it will be done under ga…as my previous urinary Stoma op has caused adhesions to bowel ( they used my appendix and made a tube which is attached to stomach wall to bladder) so they want to open me up to get a clear view…so hope the incision isn’t too big… can I ask what size cath you all have…12//24/16? I am 5ft 7 and Size8 quite petite… thanks again…I feel reassured have made the right choice re spc
I like you a a size 8 and very petite. I use size 16 catheter. I had it done last April and I use flip flow valve during the day and night bag over night. It was the best thing that I did as I haven’t had a UTI since it was done. I don’t worry about needing access to disabled loos when out or in car as long as I have my bottle at the ready to empty!!! Good luck and hope it goes well for you. Linda x
l am very envious of you being able to use a flipflow valve. My bladder is beyond control - so it does not work for me. But my method of short female length cath [16] and a bag without tubing - direct connection works so well. The bags l use are from Manfred Sauer - they are 600ml and have a cotton back - so very acceptable against my skin. And l am lucky - that l can stay the same during the night - so no linking up to a nightbag.
As usual - we have all been able to offer good advice. And even an old hand like me - still able to learn.
thank you both…
I shall look into the bag without the tube too…best have all I need to hand before the op… am sure I will find my own way on this but all your suggestions will help me so thanks…much appreciated… I am looking forward to the urinaty cath coming out…constant uti’s with mixed bugs…grrr…the mitrofanoff should heal on it’s own in time…it’s already closing well…spasms in my urethra are settling a bit as I only have a 12 in at minute anything bigger is not good… ok next question…am prone to urethral and bladder spasm…have been told they can be worse initially after the op? I take baclophen at night anyway but try not to in day…any other ideas re meds …if I need them… buscopan? oxysomething have tried but doesn’t help…no doubt they will suggest something if needs be? :/)
Hi, if bladder spasms are a continuing problem, ask your uro about botox for your bladder. I believe this is quite a common treatment and it lasts a long time.
I get spasms when passing wind or a stool when on the commode over the loo and it does feel quite intense and unpleasant, but as they only happen at those times, I prepare myself for it and it passes. I dont feel botox is necessary for me.
luv Pollx
Hi, as Poll says Botox is offered for spasms. My consultant said he would do that if I needed. At the moment I don’t get enough to warrant another procedure and just put up with them when they happen. I often feel an awful pressing down on my urethera and the feeling I’m wetting myself uretherally. It usually passes and doesn’t happen enough times to be too concerned about it. If it was to continue I would seriously think about Botox as I’ve heard good reports about it. Linda x
My mother in law suffers with ms she is in a wheelchair and has a catheter fitted but she is in a lot of pain with it she is a size 20 and she wants to know if it is worth having the super public catheter if anybody is in the same situation and her size can you please help