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Standing up from the wheelchair / toilet

Good morning everyone

To be honest it is far from a good morning. It is not as if we haven’t got enough hardships to deal with, but now it seems my body has decided to make going to the toilet difficult.

I am a wheelchair user and have a raised seat for the toilet. The problem is that it is getting so difficult to actually get on to the toilet seat and on three or four occasions I’ve not been able to stand up again to get back in the wheelchair. I had to call for a carer to come and assist me, but of course this takes a bit of time. So I think it is clear that not being relaxed on the toilet is making the whole process more difficult.

I know it’s not the most pleasant of subjects-I have improved my diet and seemed to be taking only things that make you go to the toilet, so I don’t think this is the problem. As I write this I have had three attempts without success this morning which were far from easy. My stomach feels uncomfortable and I need to go-but it’s as if my body won’t let me!

Do you think that the MS illness is stopping the signals that allow the body to go to the toilet?

The other comment I had was related to the physical act of standing up from the wheelchair. It is clear that my strength and muscles have deteriorated over the years. This doesn’t really explain why on some occasions I can stand up from the wheelchair without too many problems and other times I am like a dead weight and I can’t stand up even if I hold on to something and try and pull myself up. This is the only way I can describe it-it feels like I’m made of lead. Does anyone else have experience of this?

The whole situation is really getting me down and I’m actually cancelling things if I haven’t been to the toilet because I feel so frustrated and uncomfortable.

I’m looking forward to any comments you may have on my post and the subject.

Best wishes

Richard

Hi Richard,

I can sympathise with both of your problems.

You are right in that the parts of gastrointestinal tract can be affected by MS. The gut’s nervous system links up with the spinal cord so messages from the brain to the colon can get scrambled. (A lot of people with MS also have trouble urinating for the same reason.)

Usually the only time we know when it’s not working is when we can’t “open the bowels”. However there are specialists who can advise on suitable ways to help ease the problem.

In the UK we have Continence Nurses but I don’t know what the system is like in Germany.

As for the power needed to get off the toilet I can only think that exercise will give you the necessary lift. Perhaps others will give you a better answer.

Best wishes,

John

Hi Richard, i hope your day is getting a little better & your feeling more relaxed!

i don’t have the probs as you desribe as bad yet, but i kinda it’s round the corner, or so to speak!!. i do & have done for many yrs now, as most all men with m/s or balance or continence issues will do js sit/flop/crash on the bog!! nothing pretty or graceful then RELAX! i wear short’s most of the time & have no kid’s, the present Mrs juju, knows the procedure of urgency, she s good like that.

i do not have bars there yet just things i balance of, but this week/next week they would make the event calmer & more controlled , especially at 1/3/4 AM sillyoclock!!

have you got bars grab/balance type?, take the stress away

all the best too you Julien.

Hi Richard

Bowel emptying and getting on & off the loo have been the bane of my life for several years now. And I have the broken loo seats to prove it!

The first thing to mention is what Julian said, do you have the right grab bars etc at your loo? You’ve said something about pulling yourself up. The best kind of support for standing from the loo is reasonably heavy duty bars that you push down on rather than pull up. You may have already got this, but just in case, it’s worth a mention. Apart from rearranging the method from which you stand off the loo, it’s difficult to suggest what else you could do to help.

I’ve had a few times that my knees have given way after I’ve stood up, before I can transfer to the wheelchair, but in general it’s not the raising myself from the loo that’s the problem, it’s staying upright.

Clearly you’ve looked at diet etc to ensure you have the right stuff going in to make evacuation easier. Position on the loo can be a problem though, since you’ve got a raised loo seat, you might not be in quite the right position. Have you thought about raising your feet up so you are in more of a crouch type position?

Also, have you had help and guidance from a bowel and bladder or continence nurse? They might have some ideas.

As far as I understand it, with regard to bowel emptying, there are a number of things that can go wrong for us. Firstly it’s slow transit through the intestines. Then there’s not having the right nerve signals to indicate that you need to go. Plus, there’s the appropriate nerve signals telling the sphincters what to do.

My own problems have been to do with messages telling the sphincters to open. It doesn’t matter what my brain thinks it’s telling them, the external sphincters will not open on command. The only way I have of opening my bowels is via manual stimulation (often called Digital Rectal Stimulation or DRS). I’ve been doing this now for about 6 or 7 years, initially it was an occasional thing, but for about 5 years it’s been everytime. This has meant that regardless of what method I’ve used to help (suppositories, mini enemas, Peristeen), the sphincters just refused to open, so every ‘solution’ has failed.

So, I’ve had a load of problems related to what is essentially long term chronic constipation, from haemorrhoids, to a rectal prolapse. I’m now having a colostomy operation in 2 weeks time. (It should have been 3 weeks ago but was cancelled last minute!)

Sue

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Hello Richard

That all rings a bell, almost word for word, although I’d have to press my lifeline buzzer where you’d call one of your carers. Can I ask … Do you get the nerve pain and tightness too, in your legs and feet? I find that when this is extreme i.e. high muscle tone (I think!) it makes it even harder to stand and get the legs to straighten. I have grab rails positioned especially for the job (standing/toilet) but, despite still having fair upper body strength, this is getting more and more difficult. Often the knees give way and I just flop back onto the power chair. My legs are lead-like too … like rigor mortis with pain, and as though everything is shrinking around the bones. Saying that, I do also get the odd day where they feel a bit better - less pain and stretching out without all the tight/heavyness. If I do have to go anywhere - hospital etc - I don’t drink from about 9pm the night before … silly! I’m not even sure I need to go half the time … just feels like I do! I’ve just had the district nurse visit and she’s looking into a convene catheter (which straps on) to help with that. I know there are similar things online like Traveljohn - that doesn’t look suitable but it’s all probably worth looking into. Best wishes, Chris

Richard, have a chat with the MS nurse. Mine put me in contact with an incontinence clinic. I now use Peristeen which really helped me out.

good luck

mick

Hello Richard.

You have already had some excellent advice. I have a grab rail on my stronger side and a drop down bar on the other. I also have an electric wheelchair which can rise making it easier to stand from it.

Having been totally frustrated by hours on the toilet, I decided to take dulcolax. It’s usually one a day but on two occasions within a week I’ll take two. I always take two after I’ve just been.

As for urinating, I just expect it to take a while. When I go out, I always pad up.

You’re right about it getting us down. It’s very hard to feel like a normal functioning person with such problems. Hope you are faring better as the day goes on.

Steve

I found that even when the stool was soft my muscles had given up and I was unable to push it out myself. I now use Peristeen daily and I’ve had no problems since.

Sarah

I forgot to mention Richard, I did have the raised toilet seat to begin with, but the OT sorted me out with a toilet seat and frame - that made a lot of difference as you can push yourself up (hopefully) using it’s frame. From that position I find it easier to manoeuvre round and, using the wheelchair arms, swing round onto it! That goes over the toilet and I did find it best to have the seat removed - although doesn’t have to be. If it helps, mine was from www.medequip.co.uk via www.manageathome.co.uk

You’re OT or nurse should be able to get that for you if it would help, but there are lots of different types there to give you an idea of what’s available. Best wishes, Chris

Hi, please don’t feel embarrassed at having to bring this subject up…it’s one that the vast majority of us know only too well.

It is a few years since I was able to get up from my wheelchair safely and on/ off the loo. And I’ve broken a few seats and even one actual loo!!!

I used a patient turner, with the help of someone else, for a good while too, until that broke and I fell, crashing onto the floor.

So I had to decide it was time to give up on the legs that kept giving up on me!!!

It was time to get hoists into my home. Not long after that, I had a suprapubic pubic catheter fitted.

Life is easier, but more limited now!

We have to accept things change and find the best way to accommodate our needs.

It ain’t the end of the world and is a jolly safer way to live!

Pollsx

Good evening everyone

It has been such a comfort to read your replies to my post. Even a fourth try on the toilet this afternoon was unsuccessful, so it has been a rather lousy day-but reading your comments and advice has helped to cheer me up. I do have one grab rail at the side of the toilet and I use the door handle to help me up. The whole bathroom situation is poor and I’m still currently looking for a new flat in order to improve this.

Thanks again for your replies. I will go to bed now and hope that tomorrow morning will be better. I will use your support to keep me positive :slight_smile:

Have a relaxing evening

Richard

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Just one thing that no-one else has mentioned: bowel function can be improved a lot by standing upright. Is there any chance you could use a standing frame to stand upright a few times a week? Many hospitals have them, although I’m not sure how you get to use them in hospital. Or you can buy folding ones to keep in your home. They have motors to pull you to an upright position. Perhaps this would be worth investigating?