Im a permanent wheelchair user but I’m able to pull up on sink and stand just about! To get my knickers and leggings down to self cath. I’m now having problems where everything goes dead from waist down and I can’t guarantee I can stand… this has happened while out…hmmm.
I don’t have continence issues and don’t get up in the night (stop liquids early eve) but I’m now going round with no knickers on and having to wear loose on the knee dresses so I can pull it aside (sorry guys).
im in despair as it’s not practical to go round like this, and my ms continence nurse is suggesting SP (she’s about as enthusiastic ad I am I think because I’ve only been self cath for two years and the problems are greater).
i do not want to wear a bag, and neither do I want to give up leggings etc for baggy jogging bottoms - jeans look terrible now and involve buttons and zips.
i just feel the SP is drastic as im not incontinent (I’m a retainer), and I feel angry and worried… My partner is going away for a month so I may have falls attempting stands that we normally use a standing aid for when my legs go dead.
any advice on Sp, clothes, or just go with the pant less! Winter is a coming…
When I did ISC, I would do it while sat on the toilet. It never even occurred to me to try it standing up! So could you give that a try? And sometimes I did it while still sat in my wheelchair, and had a big jug between my legs for it to drain into.
I’ve now had an SPC for the last few years and find it a doddle, so much simpler than doing ISC. You wouldn’t need to wear a leg bag - it can be attached to a valve instead. When you need the loo, you can either stand up to drain it or, if you’re not feeling great, then do it while sat on the loo. You could attach it to a night bag as well when you go to bed, so there’s no harm in having a drink in the evening. My urologist said I can go back to ISC if I want, but I find this much simpler.
I have had a SP for several years now and I can’t imagine life without one. It’s not as daunting as you may think.
i still like to wear trousers and tend to opt for the wide leg ones which allow them to be rolled up to use the catheter with out having to remove them. If I wear jeans it’s more obvious as I use a leg bag which tends to bulge through them but I’ve got to the stage where I don’t really care so much now. It’s part of me and makes my life better and that’s what matters.
Hello Michelle I think I’m in a similar position to you. Wheelchair user, can stand and sit on the loo, can stand up again after doing ISC (I assume Dan had the wrong idea when he visualised you doing ISC standing up!) and pull up pants and trousers etc. Usually. When I can’t my husband does the pulling up while I hang onto grab bars etc. I sometimes can’t stay stood up for long enough so fall back down onto the loo / wheelchair as my legs are useless lumps of flesh and bone!! (The other day I scraped my ahem ‘hip’ when I stumbled a bit, blood all over the loo seat and my behind as well as dented pride.) What I’ve been doing is attempting to walk a tiny bit, but at the moment can’t do more than a few metres (with a walker, FES/foot-up and husband walking behind me with the ‘chair for when my legs suddenly say ‘that’s it’). So I’ve been practicing standing, trying to stay as upright as possible. Using the walker or kitchen worktops to support me and attempting to raise my arms up so only one is acting as support. Harder than I’d like, but I’m persevering. I don’t want an SPC either. I had an SPC for 6 months last year and hated it. I had a leg bag as my first attempt to use the flip/flop was too early and the wound hadn’t healed so I leaked. Yes, I was wearing jogging bottoms for most of last summer - it was a joy. I had infection after infection and was constantly told ‘well you will have with an SPC!’ I also had a wound infection. I tried again to use a flip/flo after six months (basically to make sure I wasn’t going to leak if the SPC was removed) and it worked, but you then have a problem figuring how to hide the flip/flo. When the surgeon said ‘do you want me to take it out?’ I immediately said yes and it was done moments later. I am able to wear jeans and generally manage to get them up even if it takes us a couple of goes. Hurrah for ISC. I think if you are dead set against an SPC, you should try (as you are doing) to find an alternative to it, preferably without having to freeze to death in the winter! As a retainer, without bladder spasms (I’m the same), you should be able to opt to continue with ISC if possible. Why not try to improve your standing? I realise it’s bloody hard, but just a few minutes several times a day (start with once or twice) while going commando before your husband is away and see if you can get to the point of being able to safely get your own pants and leggings up? Best of luck. Sue
I feel I should point out that I was far too gentlemanly to attempt to visualise it . I think the thing that threw me was that I didn’t see why not being able to stand up meant having to switch to an SPC. I couldn’t reliably stand either when I did ISC, and it made no difference to me doing it, so my sleepy head got confused
Dan