What's stopping you having a number two? — Scope | Disability forum
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What's stopping you having a number two?

Cher_Alumni
Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
Visiting the loo is something most of us take for granted.  Whether to spend a penny, wash our hands or go for an emergency number two, the toilet is central to us going about our daily business.  

That’s why this World Toilet Day (19 November 2020) we're talking all things lavatory-related, to shine a light on this oft unseen but essential space. 

Photo of pink toilet

What is World Toilet Day 2020 about? 

UN Water, the organisers of World Toilet Day 2020, tell us it:
“is a [celebration of] toilets and raises awareness of the 4.2 billion people living without access to safely managed sanitation. It is about taking action to tackle the global sanitation crisis and achiev[ing]… water and sanitation for all by 2030.”
This statistic reveals how stark toilet inequalities are across the globe and how we, as UK citizens, are privileged to have sanitised toilets as standard provisions.

Public toilets and disabled people

The public toilet is an especially important place for disabled people.  

For those with faecal incontinence, bladder weakness or severe physical impairment, having access to public toilets is crucial to living independently and getting out and about.    

Whilst being able to manage toilet needs adequately in public toilets shows that disabled people have been considered in the architectural design of toilet spaces and have a broader belonging and rightful place in society.

It might be surprising then that disabled people continue to face some old, and new, barriers to accessing public toilets.

Barriers to disabled people’s use of public toilets

Many public disabled toilets are unfit for use and not accessible for people with certain impairments.  The Changing Places campaign targeted this problem and drew attention to disabled people/carers:

• Laying on dirty toilet floors
• Not drinking to avoid needing to wee when they were out
• Sitting in soiled clothes
• Physically lifting people out of wheelchairs risking their safety

As a result of Changing Places campaigning, it is now mandatory for all new buildings in England to have a hygienic, fully equipped and spacious accessible toilet for severely disabled people.   

Another issue is the closure of public toilets in our towns and cities because of austerity cuts.  This leaves disabled people reliant on private toilets, such as those in coffee shops or pubs, which problematically means:

• People can feel they have to buy something to justify using the loo
• Toilets might be inaccessible, dirty or used for storing cleaning items
• Some people prefer not to go out due to toilet access not being guaranteed

Lastly, public attitudes about toilet use can be oppressive.  People with invisible impairments may be glared at or questioned because they are mistakenly thought to be using the disabled toilet without ‘good reason’.  

While the cultural rules of appropriate toilet use are restrictive if like me you have a bowel condition.  Those noises, smells and splashes I make are uncontrollable yet frowned upon by the non-disabled majority waiting in line outside the cubicle.  

Talking about toilets

Some of these issues are discussed in this film made by the ‘Around the toilet’ research team.  Their study explored how public toilets can exclude some people but include others.  For more information, visit the Around the Toilet website

https://youtu.be/LT5MJW2yVE4 


Thinking more about the loo:

  • What barriers have you experienced when using public toilets?
  • Do you feel comfortable using public disabled toilets?
  • How do you think public toilets could be designed to better accommodate disabled people?
  • Let me know in the comments below :)
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Comments

  • 66Mustang
    66Mustang Community member Posts: 13,368 Disability Gamechanger
    This is an interesting thread!

    I have OCD and I can’t touch anything in the toilet as to me everything is severely contaminated. I use the toilet tissue as a makeshift glove to operate the flush and the door and I have to “hover” over the toilet when I am going.

    I don’t use disabled toilets because I would have the same difficulty in a disabled toilet so there is no point. 

    One positive with COVID is that toilets are much cleaner and I find I am more able to use public toilets during the pandemic. I hope the newly adopted cleaning routines stick even after COVID is no longer as much of a threat!
  • 66Mustang
    66Mustang Community member Posts: 13,368 Disability Gamechanger
    edited November 2020
    Oops, I almost forgot to mention!

    What really benefits me is stuff you don’t have to touch - flushes that have a sensor that you just wave your hand over, air hand dryers that sense your hands are underneath them, and taps that you push down (I use my elbow) that automatically turn themselves off so you don’t have to.

    (Sorry this paragraph will be a bit graphic.) One improvement that could be made, and I don’t think this is just exclusive to disabled people, is that I think them supplying the cheap thin toilet tissue is a false economy. Personally I wrap it around my hand 7-8 times before wiping as I can’t bear it ripping and getting mess on my fingers so I end up using 3 times as much than I would use at home, where I only have to double or triple it up.
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    @66Mustang Thanks for your comments.  I think we tend to overlook how people with mental impairments manage in disabled/public toilets and you've definitely given me some food for thought.

    I agree; I prefer sensor operated flushes and taps, and hope that will be a function that becomes more universal post-covid.   And, yes, cheap toilet roll is false economy!! I always have to double up, using twice the amount I otherwise would  :D
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  • RAwarrior
    RAwarrior Community member Posts: 430 Pioneering
    Hi @Cher_Scope, @66Mustang

    I know I have posted some of these things before so I apologise for repeating myself.

    One of the big problems is the ongoing misuse of disabled cubicles especially in the workplace as many people think the disabled cubicle (as there is very rarely more than one) is the place to go to in order to leave a mess. I have had nearly fallen several times when I have used disabled toilets because people have flooded the floor with water, used it to have a wash or think it is acceptable to leave a mess especially when there are other toilets. It's not only me as I have heard almost identical stories from other disabled people.

    A big problem is also the lack of disabled toilets if you go out which can cause a lot of anxiety. In my experience when a disabled cubicle has a Radar Lock installed the cubicles are usually (but not always) in a cleaner state.

    I agree with @66Mustang about not touching things and a particular problem is the amount of women I have seen who do not wash their hands after going to the toilet.  

    I am sorry to hear about your experience @Cher_Scope and some people are so ignorant.

    I no longer go to shopping centres because of Covid 19 but pre-Covid I complained to a well known shopping centre because they don't have Radar locks on the disabled cubicles so they are misused by people who are not disabled and think it is acceptable to leave the cubicle in a disgusting state. The shopping centre did nothing despite me taking and emailing photographs of just how bad a state the cubicles were left in (which I am sorry to say) were disgusting. The shopping centre manager refused to consider installing Radar locks which they used to have and the disabled cubicles were in a better state. As a result I stopped going to that shopping centre long before Covid 19 because I couldn't face having to use the disabled toilets there. 

    I also heard about a woman in a workplace who is a wheelchair user and she went to use the one disabled cubicle in the building and because another member of staff (who was not disabled) was using the disabled cubicle to have a shower, the wheelchair user entered the cubicle and the wheelchair skidded across the floor! 

    I was also told by a plumber that people were going into the disabled cubicle in a well known supermarket and standing on the seat thereby weakening it. A disabled customer went to use the toilet and the whole toilet collapsed and she fell. 

    I know some people might think that these are extreme examples (and I haven't gone into detail) however, in my experience many people think it's okay to use a disabled cubicle when they have no need to because they don't want to queue or they think it's okay to use the disabled cubicle as they can leave it in any state. This means that a disabled person may have to wait and they could have problems especially if they have bladder or bowel issues. I have waited outside a cubicle for someone to come out many times and they usually have the same look on their face and when they see me standing there, they say something like "Oh sorry there was a queue." This is not acceptable given that there are hardly any disabled toilets in the first place. 

    Another thing about toilet paper is when it is in one of those sealed toilet roll holders so you cannot get it out as it breaks off. It is clearly to save money  and you have to fight to get to it. Sometimes it just gets wasted because you keep trying to get to it. I have no idea why they have these type of toilet roll holders especially in disabled toilets.

    I can't stand having to use public toilets or even the ones at work where the disabled cubicle is where many women go to to misuse despite there being a large number of toilets. For some reason some women seem to make an effort to use the disabled cubicle when it is nowhere near where they work. It is not uncommon for the floor to be flooded or for people having to side step things on the floor. I am not sure if I have OCD but I have to avoid standing on toilet paper that has been thrown on the floor. I also refuse to eat anything if anyone offers me food or if there is charity fundraising which sounds like I am being horrible. I will make a donation but some of the same people who have made cakes are the same ones who I know don't wash their hands. I have to be very careful regarding what I eat because of the medication I take.
    I don't understand why some people cannot follow basic hygiene. 



  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    @RAwarrior Thank you for your post.  Your examples really show how some disabled toilets are misused by the public, both through actions and inconsiderate attitudes. 

    Well done for trying to get your local supermarket to install radar key entry and I'm sorry they didn't act on it :(  I agree, where radar keys are used toilets tend to be cleaner and have better facilities.  

    I don't understand why public toilets are treated so badly either.  My only guess would be that non-disabled people are unaware how important the space is for those managing impairment needs.  Should they have to change their own disabled child on the floor then I'm sure it would be a different story :(
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  • emmarenshaw
    emmarenshaw Community member Posts: 710 Pioneering
    This is a great piece @Cher_Scope
  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,586 Disability Gamechanger
    Toilets are one of my biggest barriers to going anywhere...though I've never considered myself disabled enough to use a disabled one despite bowel and bladder issues.

    I think I may hate toilets even more than I hate food...though obviously, if I didn't need one, I wouldn't need the other!

    I have 'IBS', which may or may not be more than that, but I can't get a diagnosis due to mental issues that stop me even getting into a surgery let alone having the invasive tests and potentially treatment that I've been needing for years.  I also severe contamination OCD and a phobia of bodily fluids etc so, as with Mustang above, find it extremely difficult mentally to deal with public toilets.  Not only touch points but even the 'air' within a public toilet will be contaminated with small particles of faeces and vomit etc!  

    On top of this, I physically can't use the toilet when I'm out.  I've tried all sorts of techniques like breath hold, counting, etc but just never could go normally.  Both 'number 1s and 2s'.  This has been an issue since I was a very small child and is the most frustrating thing.  I could never use the toilet at school or a friends house even if it was perfectly clean.  Even in my own home I'd really struggle to go if there were other people in adjacent rooms.

    I knew it wasn't right and tried to force myself to go but it just never happened.  I avoided eating and drinking at school etc.

    But this got significantly worse when I started High School, longer days, several miles away from home, contamination & illness fears were getting much worse, I wasn't eating or drinking anything at all all day...and it was at that point my body decided it would start triggering 'mass bowel evacuations' every single morning as well.  About the worst case scenario for someone that can't cope with bodily fluids and functions!   

    Anyway, thankfully I don't have to go through that every morning now, but still have bowel and bladder issues every single day, and no way to use a toilet whilst out.  I just physically can't go while out, until I physically can't stop it - and yes, that has lead to a few shameful moments stuck in traffic etc.  It's one of the reasons I rarely go anywhere, can't travel far and can't stay out for long.  Not to be too graphic but my problem isn't the runs all the time now (as it was back in school and college), what comes out is pretty normal, but it's so frequent, unpredictable and very urgent when it does appear.   I also seem to produce massive amounts of urine at the same time as these IBS issues which never seems to stop.  Eventually I get a brief break from the IBS for an hour or so, but not the urine.  So every single time I leave the house, I feel like I'm carrying a massive bag of liquid strapped to my belly, with no way to offload it until I get home.  As well as aching bowels and nausea that seems to be triggered (or at least worsened) by the IBS, and the feeling like I'm constantly going to soil myself in one way or another.  It's horrible, and obviously makes every outing difficult, whether that's a simple Tesco shop or a walk around the block.  But it also has a much bigger consequence.  It means I can't go to a dentist or a hospital or and OCD therapist because I don't get a long enough 'break' from it and can't use the toilet there either.  

    I don't know what I can do about it, I spent many years through school, college etc forcing myself to use the toilets there but it never happened.  During college I was having to use my lunch hour to drive 25 minutes home and back just to use the toilet.  The only time I've been able to use public toilets were in the midst of a severe IBS episode which obviously makes the whole experience even worse in my mind.  And of course as others have mentioned, why do people treat them so badly!?  Do they make the same mess in their own homes?  I have no idea how I can ever get challenge this, as having IBS and toilet phobia together make many things totally impossible, but I don't think there's anything that a public toilet designer could do to make it easier for someone like me either.


  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    @OverlyAnxious Thank you for your reply.  Again, this just shows the significance of public toilets to disabled lives.  

    Apologies if I'm repeating something I may have suggested before (my memory!), but would you consider referring yourself online to a local access to psychological therapies service?  At the moment appointments are dominantly over telephone/skype and you could get referred for CBT to help with using the toilet when you are out and about.

    By the way, what you said, I can really empathise with.  Although I don't have contamination OCD, I have been in the position of rushing home to go to the loo, soiling myself when out and having that constant feeling of a heavy stomach.  It's extremely hard and you should be proud of how you have coped up to now  <3
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  • RAwarrior
    RAwarrior Community member Posts: 430 Pioneering
    Hi @Cher_Scope,

    I am really sorry to hear what has happened to you :(

    @OverlyAnxious I have wondered about how people behave in their own homes. How would they feel if someone behaved like that in their home? I could post some of things that have happened in work but it wouldn't be right for me to do so on here. I don't understand why some people think it is okay to firstly use the one disabled toilet when they are not disabled, go out of their way to use the disabled toilet when there are multiple toilets nearby and then to add insult to injury leave it in a disgusting state. 

    In my experience a lot of the misuse has been malicious because unfortunately there are people who don't like disabled people or who don't understand the issues that many disabled people face when they are unable to access a clean and safe disabled toilet. Don't they realise what a wet floor could mean to a disabled person? 

    Some people intentionally don't flush the toilet to make life even more difficult for the people who do need to access a disabled toilet.

    I can relate to some of the problems that @Cher_Scope, @66Mustang and @OverlyAnxious have posted.  I try not to drink anything (especially tea/coffee) before I go out because I dread having to use a public toilet. I cannot stand the thought of  a toilet being left in a dirty state and/or being flooded with water because some people think it is acceptable to use the cubicle to have a wash. I won't go to the shopping centre I referred to anymore because I have mobility issues so I can't take a chance that I will fall on the tiles because the toilets there are usually left  in a wet state. I have even spoken to the cleaners who have said that they have to keep calling a plumber out because people block the toilets because they put paper towels on the seat or stand on the seats. I might be wrong but I can't think of many disabled people who could  do that, I certainly couldn't.  It would save them money if they put back the Radar locks instead of calling a plumber out. 

    I was in a well known bookshop chain pre-Covid 19 and I went to use the one disabled cubicle. I waited for what seemed like ages and a man reeking of aftershave came out so I told him I had been waiting. He said "Oh sorry but I am going out this evening so I needed to use the cubicle to have a wash and get changed." I couldn't use the cubicle because the floor was soaking wet.  I had no choice but to go into the other toilets and risk falling because they did not have handrails and were too low. I had a similar experience in another bookshop. I no longer go to the shops because of Covid 19 as most people refuse to wear face coverings. However, before Covid 19 I had to work out if there were going to be any toilets before I went anywhere which unfortunately meant that I stopped going to several places because I had really horrible experiences before which meant that I couldn't go to places that I might have liked to visit. If I knew there were Radar locks installed then it wouldn't be so bad until some places removed the locks. It is extremely difficult for me to return to a place which has been left in a dirty state. It is also really bad because there are not many toilets in the first place.

    I know some people feel obligated to buy something in order to use the toilet. However, I have asked establishments if I can use their toilet and I have never been refused. I think it might be a lot harder for people with disabilities which are not so obvious but in my case people can see I am disabled.  If I was not allowed to use a toilet by an establishment I would ask them if they thought it was okay for them not to assist a disabled person or say that you would write to their head office which I would do. 

  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,586 Disability Gamechanger
    @OverlyAnxious Thank you for your reply.  Again, this just shows the significance of public toilets to disabled lives.  

    Apologies if I'm repeating something I may have suggested before (my memory!), but would you consider referring yourself online to a local access to psychological therapies service?  At the moment appointments are dominantly over telephone/skype and you could get referred for CBT to help with using the toilet when you are out and about.

    By the way, what you said, I can really empathise with.  Although I don't have contamination OCD, I have been in the position of rushing home to go to the loo, soiling myself when out and having that constant feeling of a heavy stomach.  It's extremely hard and you should be proud of how you have coped up to now  <3
    Thanks @Cher_Scope

    I'm not able to use telephones (or Skype) without triggering immediate panic symptoms - shaking, nausea, reflux, vertigo etc which then moves into IBS & urine issues if I continue with the call, and has long lasting effects afterwards.  Pre-Covid it was the lesser of two evils for me to physically visit a local unit for around 15 minutes than speak to anyone on the telephone at all.  Around this time last year I was really struggling so decided I needed to make an effort to get seen again (previous attempts had never been successful).  I had to go through a lot of hassle to get seen without a telephone assessment first.  But this just lead through 3 different face to face assessments over the course of a couple of months, having to try and remember and repeat myself each time as nothing seemed to be sent to the next assessor, and in the final one I was basically told that there's simply no service that can deal with my combination of problems...and to try again if I felt better in the future.  Better!?  Then this year was really the last straw for me going out.  When we were told we could no longer drive unless absolutely necessary that was the end of me going to places that I was still just about managing in March.  I couldn't even get to the local units anymore, let alone get inside.  And I'm still no more able to use telephones, if anything it's getting worse.  I'm having to accept a call from a couple of elderly relatives roughly once a month now that I can no longer physically get to theirs and they don't have the internet.  It's proving the telephone issues over and over again.  I seem to be the only person in the world where tasks get more difficult the more I do them...all I get told with regards to CBT is that things should get easier the more I do them!  :|

    I don't really think CBT can help with the 'shy' bladder/bowels anyway.  If it was only the contamination issues stopping me using a public loo then I know the exposures for that (I couldn't do them, but I know them lol)...but when my body physically refuses to let stuff go, I don't see what can be done about it.  As I mentioned above I've tried breath-holding and counting and the usual distraction techniques but it still remains stubborn until it's too late!
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    edited November 2020
    @RAwarrior Thank you <3 It sounds like you've encountered some pretty unhygienic toilets in your time.  Ick.  There's still so much more to be done, isn't there?  I'm glad you don't feel forced into buying something to justify using facilities either, it's a basic human need to wee or poo!  We shouldn't have to pay for the privilege.

    @OverlyAnxious Ah right, thank you for explaining.  Do you think online therapy could help with your anxiety/panic feelings?  For instance, a course where you do the reading and your own work but don't engage with anyone else directly? Just a thought but I'd love to help you in any way possible.  Let me know what you think and we can do some research :)
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  • RAwarrior
    RAwarrior Community member Posts: 430 Pioneering
    Hi @Cher_Scope,

    Unfortunately some of the worse behaviour has been by women  in work who regularly leave the toilets in a disgusting state.

    I think there is a lot more to be done especially in workplaces where people are unable to follow basic hygiene. 

    I think establishments should find it difficult to turn disabled people away. 

  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,586 Disability Gamechanger
    edited November 2020
    @RAwarrior Thank you <3 It sounds like you've encountered some pretty unhygienic toilets in your time.  Ick.  There's still so much more to be done, isn't there?  I'm glad you don't feel forced into buying something to justify using facilities either, it's a basic human need to wee or poo!  We shouldn't have to pay for the privilege.

    @OverlyAnxious Ah right, thank you for explaining.  Do you think online therapy could help with your anxiety/panic feelings?  For instance, a course where you do the reading and your own work but don't engage with anyone else directly? Just a thought but I'd love to help you in any way possible.  Let me know what you think and we can do some research :)
    Water, sewage, soap, loo roll, hand towels and a cleaner all cost money in fairness...I wonder how much Motorway services spend on the toilets that we can all use for free...  It must be thousands each month.  I'm sure it's probably added on to other service charges within the station though.  After all, you don't get owt for nowt!

    No problem Cher, I do hate feeling like I'm always shutting down any offers of help.  An online course would be best, but they don't seem to exist in my area.  I do have a few anxious acquaintances from other areas that had access to it themselves and have suggested it to me.   I really need some 'tailored' help though, standard CBT suggestions like visiting a coffee shop or staying out for longer are of no use to me at all.  I have done plenty of research and reading into my various issues but the treatment for each one is only possible without another getting the way.  I've never come across anyone with the same combination of issues - individually worse yes, but not with all of the issues at once.  It's a whole lifestyle change that I need now which I'm really hoping will be able to start once I've moved, that's why I'm putting so much emphasis on the move and particularly the 'right' place at the minute.


    Slightly off-topic but I had a bad IBS episode across about 3 hours yesterday evening.  I'd been home all day, had no tasks to complete and had no plans for today either so there shouldn't have been any 'excess' anxiety to have caused it.  The only change to normal was that I had to move dinner an hour earlier as I had a Zoom workshop/tutorial to watch.  I wouldn't speak or have my camera on, so it should be no different to watching a YouTube video, so again, no excess anxiety from that I hope.  Yet around 3pm I started feeling really nauseous, shaky and had to run to the loo for a BM, not unusual, afterwards the nausea subsided and I started putting dinner on.  Then the shakes and nausea came back much worse, back in the loo again, this time my throat was spasming, bowels and stomach gurgling and shifting, I kept belching and felt really light on my feet, honestly thought I was going to be sick which I know I can't cope with, really don't know what I'd do in that situation.  Had to keep getting off the loo and gingerly walking through to sit on my arm chair for a few minutes at a time and then back into the loo to pass more BM.  I couldn't lean or bend at all.  I was also getting large amounts of urine passing at regular intervals as well.  I was still feeling just as bad when the oven timer pinged and my dinner was ready.  Usually I can eat a bit and settle the nausea to get at least a quarter of the meal in but not this time, every tiny bite was making me feel worse, didn't even manage half a roast potato.  I gave up and had to go back to the loo, again loads more urine and BM's, gurgling, shifting, spasming...all BM's were 'normal' throughout though, which I just can't understand.  How can something that looks fine be causing such internal carnage?  Anyway, by the time the Zoom started, the nausea had subsided a bit and I wasn't having to run to the loo but still felt really rough internally and could feel the urine building again, which seems to cause nausea as it builds - I don't understand the biological reason for that but I don't think it's just a coincidence, the same happens when I'm in bed and trying to avoid getting up for a wee.  The Zoom workshop was actually really good and a nice distraction, so I'm glad I went ahead with it as I could so easily have brushed it off.  But by the end of it I was obviously straight back in the loo again to pass a large amount of urine - and then the gurgling and shifting started again due to 'hunger' this time.  It's own damn fault for refusing the earlier meal!!  It was around 8pm so I couldn't through proper food prep again, or risk eating a large meal, so just had a few plain savoury biscuits but that only held it off for a couple of hours.  By 10pm the unrelenting gurgling and shifting was back in full swing and then lasted throughout the night as well.  Then to my utter amazement, despite not eating anything other than half a roast potato and 3 savoury biscuits, I still woke up around 7am and needed a BM urgently!  And that's continued through this morning as well, though thankfully without the nausea of yesterday, so far at least, I'm dreading tonight's meal.  Trouble is, I can't cope with this at home, which is reinforced weekly if not daily, so just have to make sure it can't happen when I'm out now.  I'd never be able to get through an event like that in a public toilet.  I'm never going to get over the agoraphobia or social anxiety until I can stay out for longer without thigs like this occurring.  I barely eat anything and don't know where all this comes from.  Dietician service was no help at all...they completely disregarded my question and just said I need to eat more because I'm too thin - the sole reason for me asking for their help is because I can't do anything other than eat or use the toilet and that's not a 'life', eating more is only going to make things worse.  I have no chance at improving the mental issues until this becomes at least manageable.  Even when I tried to explain a second time, I was just given generic information about drinking more water if it's too firm (it isn't), or eating more fibre if it's small and loose (again, it isn't.  I was discharged from the service after that as they couldn't see any way to help.
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    @OverlyAnxious No problem I understand.  Let's hope the right place for you to move into isn't far away.

    Ooft it sounds like you had a funny old time with your stomach yesterday and this morning.  I hope it settles.  These seemingly random bouts of IBS are difficult to understand, they come out of nowhere with no apparent rhyme or reason.  I've tried many things over the years to calm my gut - aloe-vera juice, buscopan, actimel type drinks with varied success, and also tried a dietician too!  So you aren't alone.  BTW - your workshop sounds interesting :)
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