I know this subject may appear a little bit embarrassing for some but I just wanted to know how people cope.
My husband has PPMS and can no longer transfer when out onto a disabled toilet.
At home he has to be hoisted, this does make going out a poor choice. We try going out close to home and if there are any accidents I know I can get him home to clean etc.
I do not want us to stop going places together but how do you get around this problem?
Thanks
Caz
hi caz
i self catheterise which keeps me dry for a couple of hours.
drink less coffee and alcohol because stimulants make me pee more.
spend a small fortune on tena lady
take betmiga to calm my overactive bladder.
always know where the nearest loo is and always carry my radar key.
this is probably of no use to you as your husband’s circumstances ar different but all any of us can do is talk about our own experiences.
carole x
Hi Carole,
The urine side of it is fine as he has a suprapubic catheter it is the double incontinence issues which are more a problem.
Thanks
Caz
Hi Caz
Have you looked at the Changing Places website? http://www.changing-places.org/
These are fully accessible loos with hoists so in case of incontinence, the person can be changed. There may not be one in places you go to, but the website has a map giving locations.
There’s one recently installed on Worthing seafront I noticed the other day. Not something I need thankfully, but hurrah for them.
Sue
It might be worth looking up where there are changing places toilets , they are increasing in number all the time . They have fully accessible facilities including hoists . There is a website that tells you where they all are are nationally but tend to be shopping centres, leisure facilities and attractions etc . General rule is they usually only go in where anyone who needs them can use them , so even if it appears to be in a restricted place ask and they should let you access .
Hi, what a worry for you both.
My bladder has also been sorted out with an spc. They are marvelous, arent they?
My bowels are temperamental and I often come hom with a stomach and urgency to go. I think I contain it as I sit in my wheelie and it cant get out!!!
The new style loos are wonderful! I`ve used them a few times and yes, they are popping up in more places.
Other than padding up well and using these loos, I cant think what else to suggest.
pollsx
Wow… Thank you I never knew these places existed.
I just put in a search and found a couple where I live or nearby.
I guess you take your own toileting slings as dont think using anyone elses is very hygienic.
Brilliant!!
Caz
Thanks All I just replied to Ssssue on this as I have never heard of them.
After doing a search I found a few over where I live. Great news.
I guess we take our own toileting slings as using someone elses is not hygienic.
Brilliant news.
Caz
Yes, you do need your own sling.
I went in Huddersfield town hall on one occasion and the previous Changing Places loo user had pulled the hoist right down to the floor and it wouldnt go back up, so I summoned (oh missus!) the receptionsist, who knew nothing about how to get it back up and said she`d have to call the engneer.
No-one on site knew what to do, so I couldnt use it.
pollsx
I meant to add, that on site staff should be trained in the use and problems of the hoist. Dont you think?
pollsx
Whoops sorry hadn’t read other posts re changing places …lol…
yes they are great,ironically a campaign started by parents of people with learning disabilities who were tired of changing their adult children on the floor !
I think you’d struggle to get people trained to use them and it may put off people from having them fitted , when we are trying to persuade people to have them a lot of places will only do it if they don’t have to be involved …
Would imodium help him. I have taken it when travelling in India and other countries when I didnt have incontinence issues but where you simply couldnt get to or didnt want to go near a toilet (on a train say). How long it works depends on the dose. Also use of a medical bulb syringe to ensure lower bowel is empty beforehand?
frankly I just risk it, I do find that a sensible diet enables me to monitor my number 2,s and I don,t usually venture out if I,m due to go proper. I cant walk 4 feet but I have just booked a holiday abroad so I have a seat right next to the loo and I will try to regulate my food intake so I hopefully wont need the loo, if I do I will crawl if need be - sod it. As for needing a pee I don,t worry at all as my car has windows and on the plane has blankets to hide my cup. Most cinemas etc have disabled loo,s so I do try to get out, although I note the hoist point though … Stanley
Hi Caz
take a look on the charter supplies website they have a product called a peristeen anal plug, I haven’t tried it but it looks like it might solve your husbands problems.
i too have ppms and have started to use the peristeen anal irrigation system, this has brought about a lot of control of my bowels, I can now safely empty my bowel fully at a time I choose rather than when my bowels think they want to move, if you haven’t seen a continuance nurse you can refer yourself to their services
i hope this helps you both to carry on enjoying your trips out
Andrew
Hi andrew,
Thanks for this I will check it out.
Hubby can nolonger do anything for himself so it would be myself doing this for him which I of course never mind doing.
Yes he has seen the incontinence nurse and she just monitored his bowel movements and then set times for him to be put on the commode. These times work very well however accidents do happen.
Thanks
Caz