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

Hi there....I am an OT assistant....I assess and make recommendations for level access showers and wash/dry toilets and arrange funding for these (subject to a financial means test).
Your OT will be able to do the same and if you are eligible, you would recieve a grant for the works to be completed.
Some councils have their own 'pot of money' for such adaptations and therefore do not require you to be eligble for funding (but these do vary for county to county, again, your OT will advise).
If you meet the criteria for these adaptations, then you are entitled to have them.
If you are deemed not eligible for the funding, I would normally support the client with schemes/sketches etc and advise on the most appropriate things to consider when privately fitting a level access shower or other equipment (please take any advice....I have had situations where the client has a very attractive level access shower put it but is functionally useless to them).
But as others have said, you are only 5days post surgery, and there are usually time scales and other avenues to explore to ensure that any major adaptation is absolutely necessary and appropriate, however your OT should ask for a detailed history and maybe even request a supporting letter from your GP to justify this.
Good luck and I hope they help as best they can so you can regain your dignity and independence.

Hi OP, sorry to hear about your situation, this may help;

www.disabled-toilets-uk.co.uk/dtuk380-indus-disabled-wash-and-dry-close-coupled-toilet-699-p.asp#:~:text=The%20DTUK380%20Indus%20Disabled%20Wash,the%20elderly%20or%20less%20able.

also as others have said you need an OT assessment.

Sorry - cross posted.

I was v unlucky but have defo turned a corner on the last year or so.

If I'm honest you may struggle with caths if you can't reach. Do you think the lack of mobility is due to pain and it may get better? Are you on decent pain killers atm? If you want dm me and I'll send you my number and we can have a chat over the phone - no pressure if you don't fancy it!

I hear you on the anal tone. When ever I meet a new doctor first thing I do is look at the size of their fingers 😂

I think you will feel much more supported once you've been seen at the SIU. You will be out under them for life so the support is always there too which is nice to know.

If you do dm me just let me know on this thread as I'm on my phone and don't always get an email!

This is the one I have, holds a decent amount of water
https://www.amazon.co.uk/First-Days-Maternity-Essential-Postpartum/dp/B08R668VW6/ref=mpsa13?crid=2XOL4MKTN5X29&keywords=peri+bottle&qid=1660774061&sprefix=peri%2Caps%2C83&sr=8-3

You can get a bidet attachment for your toilet, similar to what a PP posted above. When you think you're done, just give the area a blast by pressing a button. It'll make sure that everything's clean and you won't have to worry. Can be easily retrofitted to a toilet and costs under £150.

The most popular name brand one in the states is Tushy hellotushy.com (I promise it's a link to a bidet site and not anything more salacious!).

@TooHotTooSlow

i can't add much to the brilliant advice you've had so far, except to say, give it time.

my situation is very different to yours but things I thought would be lifetime difficulties are much much better a year on.

some of the expensive adaptations I was looking at making I have improved beyond needing now.

speak to people on here, on FB & in person with OT's etc the council will help.

I know it's really really awful oust surgery & it's all a bit depressing & daunting, but it WILL get better xx

You’ve had great advice, and definitely need a specialist OT/PT/nurse input. It’s out there and a) they can go through your available options and help you choose the right ones for you and B) they discuss this all the time, frequently over lunch. They aren’t embarrassed or disgusted and neither should you be. It sucks, but it’s not your fault. You have lots of options and most people do work out ways to manage it, even people living with complete spinal cord injury who have no sensation or control at all. I hope you feel better soon.

Do you know if you have actually finished emptying your bowels, or if you still have poo stuck in the anal canal? I have issues with the muscles in my bum, and on bad days I wipe and wipe and it never finishes. And that’s because whilst I feel finished, there is still poo in the anal canal.

This is TMI but for me, it’s the texture of the poo that makes a difference. When it’s more solid, it’s more likely to all come out so no issues cleaning. When it’s softer, that’s when I have issues. So I manage it through my diet. I am on a low fibre diet, so I eat white bread, avoid caffeine, etc.

On the days where it’s neverending wiping, I strain slightly (which I know I shouldn’t) to force out the poo that’s still sitting in the anal canal. I still end up with a little in my underwear but no where near as bad as when I first developed this issue and I didn’t know what to do.

It is so so tough at the beginning, I was so depressed dealing with it, and tbh on bad days it still upsets, especially when I end up having a small accident and I haven’t even realised. But you will learn to live with it. I was early 20s when I started with this, in 30s now, and am very image obsessed, but I am mostly at peace with it.

I’m so sorry OP, please ignore my post. I misunderstood what your problem was. I hope I haven’t offended.

NC for this. VIW I hear you. I will start a new thread.

OP that sounds so tough. You've had some great advice.

Thank you all, as @Ihearya said I have had great advice

@Candyflosscrochet thank you for your professional opinion, gives me an idea of what my OT visit will consist of. Sadly I do have other issues with my spine from top to bottom meaning things won’t improve for me. It’s reassuring to read that even if not eligible for funding (which I wasn’t really looking for anyway), an OT may be able to advise on private funded options, as I’m a bit worried I’ll save hard to pay for things that won’t really help.

@VIW you haven’t offended at all, to be honest you’ve helped as I’ve realised the texture does make a difference. For example, I’ve been constipated due to all the meds this past week, so things have been a little easier in the soiling department. I had my first ‘proper’ bowel movement yesterday which was softer abd caused a lot more issues, hence the pity post last night as I am so down over it.

i will spend the next few days looking at all the links and doing some research so I can ask the OT their advice, thank you all

@Broadswordcalling i will definitely dm you thank you.

I just thought I would come back and update. My OT was lovely, suggested things that I hadn't even thought of. My stairlift is being fitted next week along with a bidet attachment for the toilet. But the big news is that she has approved a disabled facilities grant for me to do the bathroom - a level access shower and a £3000 self cleaning toilet! That will take around 10 months to sort apparently (hence the bidet attachment for the short term) but in the long term I feel life will be a lot easier if I can clean myself!

Plus, it's a big relief that I don't have to pay for it all! I assume I will still pay for basin, tiles etc but at least that way I can choose for myself

Thats fantastic news!

Thank you for updating us. Really pleased you have been able to have success with the aid you need.

Great news about your new bathroom. A friend has the all singing and dancing toilet and it is amazing.

You mentioned upthread about self catheterization. I could be too late as you may have seen the team already.

When I was being taught to use mine, I had some restricted movement, I used for a good while a catheter with an attached bag for the urine to go into. So it could be done anywhere not just over a toilet. I practiced in bed, with one leg on a chair, then over the toilet, sitting on the toilet. It was helpful as it helped me to find the urethra (hiding away and hard to get to grips with entering every time,)

Once I had the urethra found it was easy peasy, and there are a LOT of different types of catheters available so keep trying until you get the one you are happiest with.

Hope everything feels a bit brighter soon. Its very hard having a disability especially when it's embarrassing to talk to others about xoxo