Desperately need bathroom advice

[5YearsLeft]

I’ve been really sick for a few weeks now having trouble breathing since I over exerted myself in a very ill-advised attempt to travel. This means, I’ve had to increase my medication, which causes me to be in the toilet constantly.

It also causes me to have to spend a ridiculous amount of time cleaning myself when I’m done. This is horrifically humiliating, but I have no idea who to ask for advice. I’m seriously at my absolute limit. Everything is so painful and I’ve been a hideous bitch all day. I just cannot afford to spend even an extra minute sitting up in the bathroom because I can’t fucking breathe. I don’t have the energy. But how do you make it take less time? Buy wipes like for bairns? How do you throw them away? They can’t go down a toilet, can they?

I’ve always looked a bit askance at people who said they were in floods of tears and I want to apologize, because I was on the verge of them myself. Writing that out, I’m now in the ACTUAL floods of tears. It’s all just so humiliating. And the crying makes the breathing worse and I really can’t afford that.

If anyone has any advice, please. If anyone takes Mestinon (pyridostigmine) and has advice on taking it in a different staggered manner, please. (My neurologist is more concerned with my breathing, and told my stomach discomfort is neither here nor there - she’s very German about things sometimes).

MNHQ will vouch that I’m not a poo troll.

Oh bless you, that's the last thing you need with your other current medical problems. Can you just stick your butt over the shower and use that for a quick clean up? Or get one of those toilet bidet showers installed? I hope you feel better soon.

Andrex do those flushable wipes, would they be any good?

Despite what they say, they should NOT be flushed! I don't know how they get away with saying that. Our sewage system cannot cope with anything other than pee,poo,(toilet ) paper!

@5YearsLeft I'm really sorry you're so unwell, it's horrible isn't it. X

the Japanese toilets are supposed to be amazing, they clean & dry your tush! At the touch of a button (haven't tried one personally) but they're £££ so it depends if you can afford one & if you're renting, if you're 'allowed' to (though I would & just replace it later if it's an issue)

not sure if you could get one second hand?

but there are a number of attachments you can get for (normal) toilets that might help, depending on your flexibility/ability.

or undress only the bottom half and use the shower/bath attachment.

wipes need to go in nappy bags and into the main rubbish. NONE of them should be flushed, no matter what they say, they all block up the sewage system. Pee/poo/paper only.

but several times a day is SO draining. I'm sorry you're having to go through this x

have you tried Facebook? There seems to be support groups for most everything! I'm sure ut would help you to find some others in the same situation.

As a quick solution, you could use the wipes, put them in nappy sacks and throw away after each toilet trip in your main bin.

Baby lotion. Decant from a large bottle into something suitable for carrying around in your handbag, when out and about. Use toilet roll and put baby lotion onto the toilet roll for a better clean up. You don't need much and as its just toilet roll, it can go down the loo as normal. If possible in the future invest in a toilet spray attachment, you get them in the middle east and Australia. Ama$on stocks them online, hooked up to your warm water.

Used wipes during a heavy period when we were at a festival with no proper flush toilets and very limited showers. I used dog poo bags rather than nappy bags to dispose of the used wipes. They are bigger, thicker and not see through. Double bag if needed and then bin.

I'm on different meds but was prescibed lansoprazole which helped with stomach and toileting issues from the meds. Maybe something like that could help you?

Water wipes could be more comfy, pop in nappy bag and in your outside bin to avoid smell/in a good bin in the bathroom with a lid,empty once a day if you can manage.

Alternatively, a shower to wash if you have entergy. Make sure you're fully dry before getting dressed

Apply vaseline or sudocrem when you've cleaned up, it's should protect your sensitive skin.

You poor thing, hopefully it eases soon x

First of all, sorry you’re going through this. I hope it eases off soon. Virtual hugs.

I don’t know where you’re based, but in the country I live in you can buy larger sized wipes in the supermarket/pharmacy for adults. Put them in a plastic bag after use, then tie it up later and put it in the bin.

Thank you all so much. Usually I’m much better at responding. I’m just so unwell. I’m reading every comment and these are so helpful - yes, I know I read somewhere about even wipes that say flushable not really being flushable, as in they may not destroy your system but they’re terrible for the sewage, so I tried to Google but it all disagrees with each other and usually I can research but I just can’t hack it at the moment. But all of these are so smart; god, thank you so much. The bidets you install in the toilet; the lotion bottle idea; dog poo bags (they have those here, I’m in Switzerland now); double bagging with plastic; knowing they have larger wipes for adults - I’ll look for them; the lansoprazole (I’m on omeprazole once per morning but I just don’t think it’s doing anything). @Carrieonmywaywardsun @DollyDabble @Figmentofimagination @Goldenphoenix @Loooper @TooMuchToDoTooLittleInclination @SparrowsNest

You can get a loo paper spritz - it’s called Fresh-X.

My husband is on mestinon. When it was first prescribed to him he was also prescribed pro-banthine to deal with the stomach issues. Have you been prescribed that as well? He takes them an hour before food and that seems to work for him. To deal with your current problem use wet wipes and plastic bags if you have them. There are places where you can't flush even toilet paper, so don't worry about binning them. Just make sure everything is nicely tied up before you chuck it.

You can buy portable bidet sprayer bottles, much simpler than installing attachments like a bum gun. Takes about half a liter of water and gets applied simply by squirting.

@DilemmaDelilah Thank you! This is incredibly helpful. Will email neuro dept first thing tomorrow to ask. I’m in an absolute hell of a situation; in a myasthenia crisis, need to take as much Mestinon as possible, so it’s causing even more stomach problems, but I can’t just give up and go to hospital because I have a really important business meeting online tomorrow afternoon with the DVSA; my own neuro consultant is gone until the 29th. I’m on subcutaneous immunoglobulin instead of IVIG because IVIG gives me aseptic meningitis, so I’m supposed to take an extra dose of my subcutaneous immunoglobulin which I can’t take until after my meeting tomorrow, because it may also cause aseptic meningitis for me (any amount too high does). At the mo, I’m a bit of a train wreck. Hope your husband is okay.

@GrumpyPanda I think this is the best idea, waste wise, even though we’re in a drought here. I would absolutely accidentally sit on the toilet wrong, especially when I have leg weakness, and end up getting messed about by something that was attached. I was clumsy even before I was sick. Better to probably control a bottle myself. Also, I have severe vasculitis (don’t ask - my parents should never have met or had a child and there was a lot of cousin marriage in my mother’s family; there’s only one other case on record of someone losing the genetic lottery as badly as I have) so this would probably just help me clean myself, period, when I’m in a lot of pain. Everything is closed on Sunday here, so I’ll have my husband go to the pharmacy in the morning and see if they have one, or if they don’t have a specific bidet one, a smaller irrigation one that can be used for this (on Google, they look like the same bottle in different sizes, labeled differently).

I should have probably asked for help or ideas about this years ago; I’ve been on Mestinon for five years now, I go back and forth on struggling too much with it, we even had to make sure we got a flat with two toilets at great expense (for some reason, it’s the single determining factor of what raises the price - you can get a 2 bed flat for ££ but a 2 bed 2 WC flat is ££££), but I haven’t had a crisis this bad in a while, so you think you just have to live with it, and I’d been sick in other ways, and now, I just finally reached breaking point.

Thanks @GrumpyPanda I have just ordered that portable bidet thingummy, didn't know such a thing existed, should be just the thing for soreness caused by Crohn's. Genius!

I do hope you feel better soon @5YearsLeft

Use baby wipes and bin them - about half the price of andrex wipes.
If you're out, just water to moisten loo paper works well.

You could also use a lota jug at home, maybe with a squirt of Infacare or similar.

Once clean you could use some soft cloths to dry yourself rather than paper.

If anyone like @Goldenphoenix finds this thread, and is dealing with effects from Mestinon like me, other medication, Crohn’s, IBS, etc, I ended up finding this one.
www.amazon.co.uk/HAPPYPO-Easy-Bidet-Travel-Portable-Hygiene/dp/B07GBS74KF/
It’s the top seller, it seems about the price as maybe five or six packets of adult wipes, and I can get it here in Switzerland too.

I’ll probably try a simple medical irrigation bottle for 1/5th the price from the pharmacy first; if it doesn’t work, I’ll order this tomorrow.

@5YearsLeft thank you. He was only diagnosed last November (MG), and diagnosed early thank goodness, so we haven't had to deal with any crises so far. Still coming to grips with how to cope with it but he has been very lucky. I am sorry to hear you are so unwell and I hope you managed to get through this crisis soon.

@DilemmaDelilah Ah, do you mind if I ask how much Mestinon he’s on? I’m always worried that maybe I’m just not coping as well with it as I should.

So glad to hear he got an early diagnosis; November is still early days. You may find that his myasthenia stays very well controlled with minimal intervention; it works that way for quite a few people. Unfortunately, it didn’t work out that way for me, so I’m considered refractory, but that’s less common for men, and just less common, period. Have they scanned him for a thymoma yet? Any talk of a thymectomy? If so, it can be necessary with a thymoma, but with no thymoma, it’s worth weighing the pros and cons.

When had a colonoscopy a friend advised to put vaseline on the bum before you go. This can be done with a tissue, to save dirty fingers. Then it's much easier to wipe away, and doesn't hurt so much.

@TwitchyJerk Hunh, I would never have thought of that. It’s maybe the simplest idea of them all (besides moistening toilet tissue, but mine almost instantly falls to pieces)’. Husband is going to have the oddest list at pharmacy opening time tomorrow. Luckily, it’s usually deserted at 0730.

@5YearsLeft thank you. He has been scanned - no thymoma.
On another note.... I had horrendous bottom issues a couple of years ago and found germoloid haemorrhoid ointment a godsend. It has to be the ointment though, not the cream. It provides a great waterproof barrier in addition to counteracting the inevitable soreness and swelling and providing a little pain relief. I am sure similar ointments would do a similar job. Haemorrhoid ointment is good for more things than just piles!

@DilemmaDelilah Wonderful news about lack of thymoma.

And that’s interesting! Someone else mentioned a cream, or even using vaseline, just to create some kind of barrier and when I looked over here for a bidet bottle, the category had those bottles, creams like what you’re talking about, and even wipes for adults (they really do look to me like what you’d get for bairns, except there are no rubber ducks or the package or what have you), all in one “intimate care” category on the closest thing Switzerland has to its own Amazon, separate from the sexual health things.

@5YearsLeft through pregnancy, I used aloe vera gel (look for the ones that are 99-100% aloe) on toilet paper. Basically turned it into a wipe and the toilet paper didn't fall apart like it does if you get it wet.