Hi everyone. This is my first post. I have seen several posts from people that don’t have an MS diagnosis across the forum. I don’t have MS but I do have Cerebral Palsy. I hope you don’t mind me posting here. I could do with some advice. My bladder control has never been good, (urge incontinence, bladder spasms) recently it has deteriorated. (I’m having problems at night, which are new and daytime issues have increased in frequency). I have had to stop medication that helped (oxybutynin patches) as it was causing me to retain urine. I have been offered a conveen I was wondering what experiences people have had. I am wondering how well they work, for example do you often get leakage? I have been wearing pull-ups for years and they have worked well for me but changing them when out and about is awkward. Also I have another question, my GP has mentioned ISC. My dexterity is not perfect how big an obstacle is that likely to be? Thanks for reading any advice would be greatly appreciated.
hi anon
i have ms and none of us mind if people with other conditions come here.
i’m assuming you’re male.
i self catheterise using speedicath compact, sometimes with a speedibag.
the bag helps me see how much i’ve been retaining.
i could use a jug but end up spilling it and having to mop up.
my dexterity isn’t as good as it once was but i manage the catheters.
you should be trained in their use by a nurse from the bowel and bladder clinic.
give it a try, you may surprise yourself.
i spend a fortune on tena lady!
get a referral to the bowel and bladder clinic or you could refer yourself.
i self referred. just google the nearest bowel and bladder clinic, ring up and make an appointment.
good luck
carole x
My dexterity is fine at least with my arms but my close vision makes it difficult to aim. Male catheters are so long (perhaps a foot long) and flexy that I have found it necessary to hold it part way down its length rather than at the top end to stop the flexing movement to be able to direct the tip more accurately into the urethral opening but this adds to infection risk. However, if you took particular care over cleansing the skin of your fingers before holding the catheter lower down, perhaps with an alcohol rub (though may cause irritation) or wearing a sterile glove, then I would think the additional risk would be minimal. If particularly diligent about the cleanliness then I think you could probably even hold it very close to the tip which would make aiming and insertion a hell of a lot easier. As for the Conveen, I gave up very quickly as I just could not stand taking minutes to peel the sticky condom away from pubic hair growing part way along the base of the penile shaft, however, removing that hair would be a solution. I cant begin to imagine how the ladies can cope with strip waxing. I assume you are on Tamsulosin to relax the prostate? If not query with GP whether this would reduce retention sufficiently to not have to use ISC and it might also reduce the incontinence as retention can lead to overflow incontinence and bladder spasms. I know what you mean about the difficulty of changing a pull up in a toilet cubicle, what about the pads that fit in net pants - you can just ‘whip’ pads in and out without taking down the pants, or what about the belted incontinence briefs? They don’t require so much dexterity as the ‘all in one’ nappy style as you can loosely attach the belt first so they can be pulled up like a pull up and then you can tighten the belt once its on.
Hi, That is excellent advice from Carole. Refer yourself to a Continence Clinic. They will be able to discuss all the options and supply you with the system that is best for you. There are a lot of small variations with each type. Once you have got a prescription for a particular supplier they should be able to give you samples so you can try out which one you prefer. I use the both the sheath and ISC methods. Regards, Anthony
Hi
mrbobowen
Request on your next prescription Coloplast SpeeediCath flex 28922 catheters for men they come in a box of 30.
They are fully shrouded and you can hold them right at the end before insertion and I never miss with them.
They also come in a grey plastic wallet which you can put in the back pocket of your jeans and are very discreet if you go to the gents
I also use Coloplast 28212 the long flexible ones, which are a bit of a hit and miss.
It usually takes me 3/4 times to get them inserted even after 6 years
Hope you find this useful
Hi
Welcome to the MS forum. Obviously, there are problems shared with CP and MS. So we are happy to try and help.
Seeing someone from the bowel and bladder service is an excellent plan. They’ll be able to advise you on how best to approach ISC. I can understand why Bob suggests holding the catheter part way down as male catheters are long. But I can’t see that it’s a good practice suggestion. Sterile gloves might actually make your dexterity worse as you wouldn’t be able to feel what you’re doing. Antibacterial gel is a solution, but again what you’re doing when you pick up the antibacterial gel is not necessarily sterile in itself.
I can well imagine the pain involved in removing a Conveen catheter. But it may be that you need to try self catheterising and using a Conveen. My hands are really pretty iffy and I manage to do ISC, but then I’m female and the problems are different. Women have to be able to do it without being able to see where they’re putting the catheter, and dodgy hands plus no feeling downstairs takes some practice and it’s possible that you’ll be alright with practice. Just be prepared to throw a good few catheters away when you start.
Infection control is the key to doing ISC. So keeping everything as clean as possible.
If you can’t manage to do ISC or use a Conveen, have you considered a supra pubic catheter? That might be an answer to the continence pants / pads problem.
Sue
Hi,
I’ve been using a conveen since 2016. There’s no pain involved if you take care when putting a new sheath on to keep any stray hairs out of the way. They really make my life easier as, being in a wheelchair, I cannot use a normal toilet. Having a bag attacheď at night means I can enjoy a full nights sleep without having to wake to use a urine bottle as I can’t get out of bed unaided. It’s noticeable how full the bag is in the morning because I do wonder how I managed pre-MS as I don’t recall getting up many times during a nights sleep and I didn’t have wet clothing either.
As far as leakage goes, there is no problem for the vast majority of time. As I said, in 2 years of use there have only been 3 or 4 occasions, usually at night, where the conveen has failed and the sheath has come off.
Neil
Thanks everyone for your responses, suggestions and help.
Carole, yes I am male I should have mentioned that in my post. I’m a little surprised that you cannot get Tena lady through your local incontinence service. My local NHS group has recently switched from Attends to Tena branded products. I an in contact with the local bladder/bowel clinic but thanks for the suggestion. I have been waiting for an appointment for a while now, they are so oversubscribed!
Mrbobowen thanks for the information about ISC it sounds a lot less daunting now. Again in my original post I should have mentioned that I am 38 so I am not yet on any medication for prostate problems. I will ask about net pants and pads at my next appointment with the incontinence team although they really want me to try a conveen so it may be a difficult ask.
Anthony, thanks nice to know that you use a sheath and that you have not recounted any disaster stories!
Ssssue thanks for the advice I had not realised the importance of keeping everything ultra clean again if I do have to start doing ISC that information will be really useful. Re: A supra-pubic catheter it has been mentioned in the past once when I was 10 and again at 26 my GP suggested that would be the urologist’s solution (My bladder control was ok between 12 and 25, well I got to wear normal underwear (that was my measure of success) even if I did think that everyone went to the loo every half hour! I didn’t know any different!). I have never taken up the offer of a referral to urology, it may be time to see what they have to say.
Neil, thanks I must admit I would thoroughly enjoy sleeping through the night without having to worry about waking up wet. It is encouraging to hear that you have had so few problems over two years. I was worried I would swap leaking pads for a leaking conveen.
Again thank you all for your help, it is much appreciated.
Thanks Bertie, often wondered why they were not so designed. Maybe its to save pennies that I was not offered those. Anon I think the conveen may be being pushed to save money but you need to go with what works best for you.
I suspect it is about saving money. Then again I suppose there has to be a limit on the number of pads that you can be given - if you exceed that I suppose you are automatically in conveen or catheter territory - unless of course you can afford to buy them yourself but for anyone with a chronic problem that would break the bank!
Hi Bob
Why not phone your delivery company and ask for a sample of these catheters. In general, I can order which ever products suit me best and cost doesn’t come into it. If they suit you, then you could switch.
(My continence and ostomy products altogether must be unbelievably expensive. And my GP just says ‘order what you want/need.)
Sue
Hi there, I’m new to any forum but I do read them from time to time. I have SPMS I’m female and 75. I’ve suffered with incontinence for along time but now things have changed and I am retaining urine and I’m getting worried about this. Is this another effect of having MS? I’m drinking lots of water so I’m surprised that I’m not peeing a lot more. I suppose I should see my GP but getting to the surgery is a bit of an ordeal.
Does anyone have any advice?
Hi Sue
My catheters dont come with the pad deliveries; I pick them up from the chemist on a prescription that has renewed since a botox op, but will ask GP about changing.
Jacamina there is no option to bypass the GP over this, severe retention can actually become a medical emergency and lead to serious kidney damage, otherwise an increased risk of uti s and bladder stones. Perhaps you could ask for a telephone consultation and go from there, in the meantime it could perhaps be useful to record your input volumes (drinks) and outputs and frequency over a day or two.
Hello mrbobowen thank you for your response. You are right, I do have to speak to my GP on this matter,
I do put things off because of my mobility issues, I will do an online consultation.
You could ask your GP to refer you to the bladder and bowel service. Or you could self refer (or of course if you have an MS nurse).
Bob is right, urine retention is problematic. The most likely scenario is that you’d get more infections as urine that sits in the bladder is a breeding ground for bacteria.
It is something that doesn’t always come easily at first, talking about bladder problems. But the more you talk about it, the easier it gets.
Sue
The bladder/bowel nurse has mobile scanning equipment and can do a bladder scan during a home visit. They seem quite happy to do home visits, (at least that is my experience).
Hi Sue and Anonymous I didn’t know about the hone visit bladder /bowel scan, that’s good to know.
i have submitted an online consultation and now awaiting a reply I guess they will ask for a urine sample.
I do get frequent UT’s I suppose it’s caused by my immobility.
It has been my experience too. I’m in West Sussex. I’ve always had home visits and they’ve used mobile scanners. Even my MS nurse has done bladder scans during home visits.
Sue
Thank you Ssssue and Anonymous that is good to know any I will certainly bear this in mind . x
I am carer for my wife who has had MS, secondary progressive, for over twenty years. My uses a suprapubic catheter and I have had to learn a few things by trial and error over the years. Here are some tips:
I use electricians insulating tape ( just a small piece) to secure the connection between catheter and leg bag and leg bag and night bag, these have become detached in the past entailing lots of washing. I put the night bag in a washing up bowl or bucket, on one occasion the faulty leg bag burst and soaked the bedroom carpet.
I have learned to do a bladder wash which is useful when sediment builds up an blocks the catheter (uro-trainer). This has saved a lot of work waiting for the district nurse coming out to change the catheter.
I have learned that normal catheters are not suitable for suprapubic patients. They only lasted on average a couple of weeks, the continence nurse recommended a change of catheter and they now last for 6 to 7 weeks.
when the nurse changes the catheter make sure she puts gel in before she takes the catheter out as well when the new one is inserted. If you know when the nurse is going to change the catheter take a couple of paracetamol before she changes it.
I do have more tips, but this will do for now.