Embarrassing health issue

[TooHotTooSlow]

i have a very embarrassing and emotional health issue that I’d like some advice on please, posting in chat so it’s not permanent

I have had a bad back for over 5 years now, which has progressively worsened. This past 5 month I have had emergency surgery for Cauda Equina twice, which has left me with some permanent issues, particularly relating to my bowel.

I have a lot of nerve damage so while there is still a bit of feeling there, there is also numbness which is massively affecting my bowel habits.

in a nutshell, I can’t tell when I’m finished a bowel movement, and as my mobility is so poor, I also can’t wipe myself properly. This results in multiple soiling incidents, which is absolutely destroying me. At the moment I’m resorting to cleaning myself in the shower (an over bath shower at the moment, which I am really struggling with climbing in and out of, but I’m worried that the shower drain can’t cope with the excess poop going down there. Am I going to fuck up my drains?

I live in social housing, and already have permission to update my bathroom, replacing like for like. However, I’m now wondering about asking if I can just take out the bath and put in a walk in shower (I’m paying) - I do have an OT visiting to do an assessment soon but I’m not sure if they need to agree to it if I’m paying? I can’t see why they wouldn’t, it would just take up extra time.

I know that’s a bit of a ramble, I’m just 5 days post surgery and feeling very low and anxious about my future

That sounds so difficult. You need to tell your doctor

Sorry to hear of these health worries
also just to mention Chat used to be 90 days I think but now it is permanent,
ask MNHQ if you want this moved.

you are only just 5 days post surgery and I am sure still recovering physically and adjusting mentally. Perhaps ask your specialist how long the recovery time is and if your continence issues will improve as time goes on. If not then perhaps request a referral to a continence nurse or similar hcp.

I guess it depends if HA are happy for you to Replace bath with shower so your OT could assist with getting approval or even funding.
Have you tried a bottom wiper?

Another alternative is a closomat wash and dry toilet again OT will advise.

You poor thing - what a horrible thing to have happen to you. Have you looked into getting a Japanese style toilet or having one of the shower style attachments fitted for use on the toilet? It should be easier and much more pleasant to get yourself clean.

Oh I didn’t know that about chat

Sadly the nerve damage is permanent so this is something I need to figure out a way to deal with. I have an upcoming appointment with the specialist spinal injuries doctor as my surgeon felt I needed more specific help in the long term than he could give.

I have a bottom wiper but even with the long handle I can’t clean myself properly as I could sit there for an hour repeatedly cleaning myself yet still not know if I am properly clean. It’s awful. Even I can smell myself.

I have looked at the wash/dry toilets recommended in my support group, but they’re so expensive. I guess I’ll ask the OT about one but I’m not holding out much hope.

Would a bidet be something that would help?

Get the housing OT to assess you. If you need a walk in shower then the council can do that for you. It shouldn’t be up to you to update your bathroom. I’m sorry you’re having accidents and hope things get better. Remember it’s very early days . All bathroom waste water and wc flush water ends up in the same place which is in the sewers . Just disinfectant your bath waste regularly and flush it with a large amount of fast water daily eg run a bath tap fast / put water in bath and pull the plug so it surges away and cleans the waste pipe .

Or there's something like a shower hose that fits onto your toilet, that might help?
Pic attached

I have never used a bidet and not actually too sure what they do! My bathroom is too small I think though. Hmmm, although if I’m taking the bath out there may be room at the other end of the shower. Thanks for the suggestion

Hi OP, this sounds really difficult, I'm sorry your having such a hard time.

There are cheaper options like portable Bidet (squirty bottle with long nozzle) that you can get which may help but ultimately I think the OT recommendations and then retrofitting your bathroom with a more accessible walk in shower seem like the best way to go.

www.mobilitysmart.co.uk/toileting-aids.html

Hello OP. Cello CES buddy here, had it 3 times. You have my total and utter sympathy. Early days are dark days, however there is light! The spinal injuries unit will help you with bladder and bowel. Dependent on your situation you may be admitted for help with this. I was thought how to do intermittent self caths and put on peristeen (now peristeen plus) to irrigate daily.. and low and behold they have now bought out anal plugs which hold everything in for 12 HOURS!!! Not sure how well these work yet as only just started on them.

The issue here is that your sphincter will be playing up. This could settle in a few weeks but it may not. Basically it's what allows you to hold everything in when you need to go but crucially helps push everything out at the end. When it's not working you have no control. For now I would pad up, get yourself a shit load of sudacrem as you'll get sore and get wipes for your bum and go gentle. Hopefully your mobility will improve in the next week or so. If you are really struggling speak to your gp and see if they can arrange care until you're feeling less sore in your back. I had CES 3 times in 15 days and I know what trying to wipe your own numb ass feels like.

I'm nearly 3 years in now. Just started working again and very rarely have accidents anymore. Keep the faith

Xx

This week we were in a Japanese restaurant with a Japanese toilet that literally automatically washed and dried you once you had finished. You just pressed a button to your left to wash yourself and then another to dry you with warm air. Might be much less hassle to install one of these rather than change a whole shower unit. Just a random thought though I know no more of the details on these and they may be complicated to install.

Thank you, that’s really reassuring re the waste. I already chuck loads of hot water and disinfectant down there so hopefully I won’t be causing damage. It just really gets to me having to do it, plus it’s so visual meaning I’m reminded of how unclean I am every time I go in the shower. Which is currently 7-8 times a day.

I have only lived in this house for a year, and when being shown round the housing officer specifically said while the bathroom needed updating cosmetically, there was nothing actually wrong with it so they wouldn’t update. I agree, but you can only live with a pink 1980s bathroom for so long

You can ask for an OT assessment from your council. They will come round and talk to you and make any recommendations you need and the housing association/council will have to make those adjustments for you. Sometimes they do matched funding with the council so each pays half depending on your financial situation.

You can also get a sort of hose attachment so you can wash yourself with water while you are still on the toilet. I’ve seen them somewhere and it is something you can talk to the OT about when they do the assessment and see if it can be included. Best of luck. It will take time but worth doing.

The shower hose toilet attachments are very powerful, maybe that would be the best option for you?

Also.. just in case you're not aware there is a couple of Cauda Equina support groups on Fb. One is Cauda Equina spinal cord injury. The lady who runs it Allison is fantastic and will be able to talk to you over the phone and can offer a wealth of knowledge. I've just had a spinal stimulator fitted and my quality of life has changed dramatically. My nerve damage will always be there but the electricity on my spinal cord changes the way my brain processes it. As I said .. you're early days and it will get better xx

I had CE. Mostly use a bidet bottle and sometimes water wipes (which I bin, don't flush)
After I've used the bidet bottle I dry with a flannel (have loads) which can then go in the wash

Oh and hydromol. You can wash with it or use it as an ointment and it doesn't irritate or cause thrush etc

We've recently returned from a trip to se Asia where every toilet had those hose attachments.

I was suspicious at first but a total convert by the end - they are brilliant and sound exactly what you need. I'm missing them now we're back.

Hi OP have you heard of splinting. I have to use it for most of my bowel movements. Press on the inside wall of your vagina and it encourages any poo that's still up there to get into the toilet bowl where it belongs

I bunch up a roughly fist sized amount of toilet paper and then press so that anything in my rectum leaves as it should.

Apologies, I’m trying to respond to everyone who has kindly replied, but I’m on my phone and it’s difficult!

@FatAgainItsLettuceTime im looking at those squirt bottles right now thank you. They’re not that expensive so willing to give them a try!

@Broadswordcalling 3 times in 15 days - wow, poor you! When my GP was on speakerphone to the ortho on call at hospital trying to get me seen as she thought it was CE again, he was adamant you can’t get it twice!

We are looking at the self caths next week, are they easy enough to use for someone who can’t really reach that area?

My anal tone (can’t believe I’m actually discussing this..) has been poor since my first surgery and as it’s worse now, my surgeon doesn’t seem to think it’ll improve significantly. Anal plugs seem like a dream, actually more like a nightmare as I’m so sure there (can’t reach to put sudocream on, tried to use bottom wiper to slather it on - wasn’t a great success)

Have a wash and dry rimless shower toilet unit fitted. Toilet seat fitted to wash and dry, fantastic for people who can’t clean themselves or a cheaper handheld Sprayer Shower Head Toilet like they have in every Finland household. These two appliances do not need a bidet. Other than that in France small bathrooms may have a a bidet on wheels under the handbasins that is attached by flexible plumbing pipes.

Is there a spinal cord injury nurse? Speak to them if so. Could you try some sort of irritation system like a peristeen to give you control back?