Toilet Issues

Lisa_Norfolk

Hello , I am 42 and have severe Oa in hip Lower back and moderate in other hip, I have always suffered with sciatica and the Oa has been extremely progressive in the last year I have a flattened femur bone and cysts, I struggle with mobility and technically a wheelchair user however pride see me use crutches more often than the chair I have been suffering with urine incontinence for past 6 to 12 months usually just not getting there in time but lately its definitely not feeling the urge, when I venture out I use Tena slips wear long skirts or dresses to cover up, I cannot use pull up style supermarket bought ones due to inability to change them independently but have a good way of using the slips with tapes. I have noticed over the past couple of months when I'm at home and I used to make it to the toilet on time this just isn't happening and I am sitting in wet clothes with no way of changing them, I spoke to doctors and all they have done is referred me to incontinence team to get me free Tena slips and tells me unfortunately this is very normal for pelvic Oa as severe as I have has this happened to others as it feels dismissive inside my head I'm a young woman still 😢 x

Ellen

Hello @Lisa_Norfolk welcome to the Online Community.

I see from your post that you have OA in both hips (one more so) and in your lower back and use crutches or a wheelchair to get about.

You are struggling with continence issues not due to being unable to get to the toilet in time rather not knowing you need to go. This must be very distressing for you and worrying.

You have been referred to the continence team for help and you are feeling as though they are doing little more than providing you with free incontinence pads. At 42 you are feeling far too young to be written off like this. Is it worth you asking your GP to be referred to a consultant who deals with back/pelvic issues? I am attaching some information about back pain which you probably know most of, but might be worth a read:

https://www.versusarthritis.org/about-arthritis/conditions/back-pain/

I am so glad you have found us and were brave enough to discuss this subject openly. I hope some of our members will see your post and maybe will have some suggestions to make.

Best wishes

Ellen.

frogmorton

Hello @Lisa_Norfolk

you poor thing! I bet you are upset I know I would be. I always thought we had to careful if we became incontinent. I hope 'they' are monitoring your back and other joints for you at least?

It's not at all good to be sitting in urine is it at all for our skin so I also hope the continence team have given you all options available to you?

I think you are so brave bringing this subject up no-one likes to talk about it and am sending you some useless but well -meant ((())) from me.

Take care

Toni x

stickywicket

I don't know if it's 'normal' but it must be very distressing. I've investigated incontinence products twice and very reluctantly. First time, I was just out of hospital with a hip problem and about to fly out to California to visit my son and grandson. I knew, from past trips, I would now be unable to deal with the aircraft loo. Fortunately, I got my hip good enough beforehand, though. Secondly, said son and grandson were coming for a visit and I didn't want to miss out on any trips because, by now, I couldn't even cope with some so-called disabled loos. Again, not needed as there was no way I was going to 'Go Ape' or do zip wires etc😉 But it was a time of anxiety.

You seem to be dealing with it as best you can. All I can think of is:

1. Are these people any use? https://www.incontinenceuk.co.uk/managing-your-incontinence
2. I assume you're doing both hip exercises (https://www.versusarthritis.org/media/23179/hip-pain-exercise-section.pdf) and pelvic floor ones. If not, go for it though ensure you're doing them correctly. I believe we have to do the pelvic floor ones as directed several times a day for at least weeks. (https://www.nhs.uk/planners/pregnancycareplanner/documents/bandbf_pelvic_floor_women.pdf)
3. Having done these for a month or so, I'd then ring my surgery again and see what else might be possible, either because they've helped a bit or because they haven't.

This is all a bit inadequate but good luck and please keep posting.

crinkly

Hello Lisa.

If I were in your place, with such dismissive treatment from a GP practice, I would at least ring NHS 111 for advice. And don't minimise your problems or hide the fact that your GP is unconcerned when asking for help!

It may be that your GP has not met such rapid progression of OA before so regards every case as the 'wear and tear' mentioned briefly during training, imagining that your are exaggerating things.

I'm a lot older than you but have very similar symptoms associated with long-term OA in lumbar spine and SI joints. I am currently waiting for an appointment with a spinal surgeon and have been told to report to A&E at once if my relatively mild urinary incontinence worsens or the other signs of increased nerve compression get worse. If these are not dealt with appropriately loss of sensation can become permanent and bring all sorts of problems.

It's really unfortunate and rare that your arthritis has progressed so quickly so I do hope you can find someone to take your situation seriously. If you go to A&E be prepared to be assertive even though you must be feeling dreadful - only you know how bad it is and you must insist on getting help ASAP. If possible get a fierce friend to go with you!

Please keep in touch and let us know what help you manage to access.

Skinny Keef

Hi Lisa, it’s got you young, me too. The only advice I can offer is on the use of your chair. Please don’t struggle on crutches. You obviously manage better with the chair so give yourself the luxury of rolling rather than struggling, you have enough to deal with and reading your post actually brought tears to my eyes and I’m sposed to be a rufty tufty ex copper!!!

I ‘gave in’ and got a powerchair a few weeks before Christmas and then after trying it out and hearing a few nasty comments I went back to struggling with my stick for a while. After one particularly bad day where I had a very short in distance but very long in time walk back from my local shops I promised myself I wouldn’t put my body through that again and I use my chair nearly all the time because I know even on a good day how quickly I can deteriorate and end up struggling to walk.

Don’t let your pride beat you up.

movingslowly

Unable to offer anything other than best of luck xx

Lisa_Norfolk

Thankyou all I have chased up contininence team today and they were nice on phone talked about possibility of catheter and goingvto arrange a back to neck scan to find the nerve damage xx

As for the wheelchair when I say I use crutches it's to get to car then pick kids up and get back in the door to socialise or go out I would have to use the chair so often just shy away from doing it but 2023 going to be different here I come thankyou all xxx

stickywicket

Hey, @Lisa_Norfolk , you sound to be one very determined lady. You deserve success and I hope you get it in one form or another.