Toilet troubles

[PatsyDahling]

I have a really odd problem which I suspect is rooted in anxiety. Whenever I go out and am no longer in quick or easy access of my home I need the toilet. It doesn't seem to matter if I went before I left. It's a psychological thing of overthinking so much that it creates the genuine urge to go. It can be bowel or bladder issues but usually bowel. And if I begin to panic then the urge to go gets a lot more urgent.

It's affected me to some extent for many years. But during lockdown when many public toilets have been shut and shops and pubs haven't been available to go into Ive found it so much tougher to go anywhere. Yesterday I took my dc out on two separate occasions and both times I had to stop at a supermarket to use the toilet.

I look at people who are out hiking or going to remote places and wish that I could do those things. We are going away for a few days next month and the car journey is about an hour. I already know this will cause a problem for me.

I realise this sounds like an odd issue but if anyone else has experienced it i would love to know how you cope and it youve ever managed to fully overcome it.

I have experienced this for around 20 years now. It started when I was around 10 and has got progressively worse as I get older. It severely restricts me. I can't go on trains, buses etc...I can only go somewhere when I am driving and in control, and even then, only on a good day and within a 5 mile radius of home and to locations where I have scouted out toilet opportunities ahead of time.

For me, it all started because I had undiagnosed coeliac disease for 10 years and the unpredictable nature of my digestive system cause some near accidents. I've been gluten free for 11 years now but the psychological impact hasn't gone away.

I take citalopram for daily anxiety (30mg a day) and I am under the care of a psychologist. The NHS waiting list is quite long but once I got to the top it has been a great help. I actually just came off a video call with her a minute ago.

I'd suggest speaking to your GP about it and see what they advise. It can be a long process to correct the thinking though. Good luck with it!

It isn't an odd issue at all to those of us who have suffered with this.

I have had IBS on and off for most of my adult life, really since late teens. A lot of it was down to an overactive thyroid which went undiagnosed for some years (Graves Disease). That is now under control and things are better, but I still take daily loperamide to try and control the off flare up. Psychologically, I just can't risk the humiliation.

Has your GP advised you regarding any tests or medication which might help?

I am finding as I am going through the menopause for the last few years that mine is subsiding somewhat, so I do wonder if some of it over all this time has been hormonal in some way.

Whenever I have a panic attack I end up having anxiety shits. It's a delightful additional symptom.

I also used to take part in musical productions in highschool. You can bet your arse as soon as that curtain lifted I had a turtle head.

I have had various tests for IBS symptoms and nothing has ever come back conclusive. No allergies or intolerance. The occasional unrelated flare up but honestly the day to day symptoms are caused by psychological rather than physical reasons I think. It's rare that I have issues at home or in a safe space like my workplace but put me out of my comfort zone and the symptoms come on hard and fast.

I try not to let it hold me back too much but it's incredibly inconvenient and does restrict me going to certain places where I know a toilet isn't going to be available. Long car journeys or public transport also a huge issue. I hate it and I just want to be able to get on with my life without this hanging over me.

I'd mention this to your GP.
I'm not surprised it has been worse since lockdown. I find it absolutely ludicrous that toilets have been closed everywhere and am very glad I live in a country which has had public toilets and toilets in shops open all the way through the corona crisis and our figures have been much better than the UK's, so obviously having toilets open hasn't made things worse.
Are toilets open again in the UK now?
What I'd suggest for the one hour car journey is planning a toilet stop for 30 minutes into the journey. Plan it, know where you are going to stop, everyone travelling with you is aware there is going to be a stop so there's no discussion/pressure about it not being "necessary". If you know you will be stopping that might help the anxiety a bit.

BTW - people going for hikes in remote areas go to toilet on the trail.....

Anxiety definitely does make you need the toilet more so if you can get help for that it might ease off a bit. I don't have anxiety about not being near a toilet as you describe (mainly because I know that I'd just park my car and go in a bush if absolutely necessary...). However, I'm a musician and just before a concert when I'm nervous, I am permanently going to the toilet - it's a nerves thing definitely - sometimes I can go 6 or 7 times in the hour beforehand!

@fflelp thank you it's reassuring to know it's not just me! There is definitely a strong brain/gut link. I think most people will have experienced a nervous tummy but for me it's almost become a fixation. I suppose the fact that people hiking and so on just go in a bush should reassure me that in an absolute emergency I'd just have to do that. But again, I've built this up into such a big issue in my mind that it would be a major and embarrassing ordeal! Stupid really to let it control me this way.

I have considered seeing my gp (and I have done before but they've focused more on the physical symptoms) but I feel the only option left now would be anti anxiety medication or therapy. I tried therapy once before and it did nothing for me. I'm reluctant to try medication for this alone. I feel like it's something I should be able to control and conquer myself. But the fact is I feel like I can't control my body once the urge to use the loo starts. And that's what the fear is all about.

I know where you're coming from, OP. In my case I've thought of it as 'stress-related IBS', though I've never been diagnosed with it. I've been offered a colonoscopy but my poo hang ups are now so pronounced that I couldn't deal with the thought of anything going 'up there'!

Mine is the mornings. If there's even a hint of having to be somewhere early, or even a 45 minute drive on the school run, I'll get lava poos nonstop, even with several loperamide. I had to stop doing the school run in the mornings because the traffic was heavy and there was nowhere to stop and often I cane close to having an accident.

It got to the point on holiday that I had to drop out of a family surfing lesson because it was on the beach in a wet suit (with no loos) at 9am. I knew I'd get worried and it would start. I'm the same with presentations, meetings, job interviews, basically early morning anything.

I had my gall bladder removed years ago and it's definitely worse since then (something about the bile dumped straight into your system when you wake up), but I know it's mostly psychological. Now I work from home and carry dog poo bags in the car... 😩

I'm similar but with bladder. I know I could go anywhere but the thought of saying to my husband that I was just going to pee in the bushes is unbearable. I know people have shewees etc but it's the whole thing of having to go off and find somewhere and tell everyone what you are doing etc.... Eugh!

I was the same since being a child. I think it stemmed from my mum's partner at the time who had a bladder like a camel and used to find it a huge inconvenience with much huffing and puffing if we went anywhere and had to stop for a loo break so I began to dread days out. It is marginally better now I'm the grown up on days out and can decide on a loo break if I want to! I still worry about traffic jams etc though, anything beyond my control.

Yes a traffic jam or being stuck on the motorway for any length of time is my worst nightmare. The confined space and literally nowhere to escape to would terrify me. I'm quite surprised. It seems quite a few of us suffer with this, im surprised. Although I guess it's not the sort of thing people freely discuss

I have severe stomach and duodenal ulceration, which means I vomit up to 10 times a day (on a particularly bad day), but usually at least 2 - 3 times. I feel nauseous constantly and am always in gastric pain and as it's been going on for so long now (around 5 years), I'm pretty skilled at managing to hold back until I can get to a suitible place to throw up. These issues also lead to bowel problems and I can go from feeling constipated to diorreah in minutes, and I have to get to a toilet very, very quickly.

However, I have 2 daughters and need to get on with life, go to the shops, take them to school etc., so I applied for a 'Just Can't Wait' card from the Bladder and Bowel society. Obviously I know where all of the local public toilets are (I also have an app called something like 'Find a Toilet', which will direct you to the nearest public convenience), but there are times when I just know I'm not going to make it that far.

I use the card in shops and cafes - I've even used it in an office block I was passing, after waving it at the receptionist - and they will nearly always let you use their toilets.The card is free to apply for and says something like "The holder of this card suffers from a bowel or bladder disorder and is unable to wait to use a toilet. Please let them use yours. Thank you." I think mine arrived within a few days of applying and you don't need an official diagnosis or letter from your Dr or anything. Might be worth having one to help you feel a little more secure, perhaps?

Have you thought about train not car? Where there is a toilet.

OP, there is help for this.

It's one of those problems that CBT can REALLY help with - especially as you have already seen the link with your own anxiety.

If it doesn't help, it may well be down to your practitioner, not to CBT - and the people doing CBT on the IAPT scheme are not always that great I'm afraid. If instead you can get an NHS physio who does CBT, they are often good at the health-related stuff like this - and it's one of the things they can do over Skype etc.

In the meantime, I totally agree with getting the card a PP suggests.

I really hope you can find someone Op, it is so freeing to not need to be near a toilet

Yes, same here OP.
It started as I had a genuine issue with my bladder which is now under control mainly (through what I eat and drink) but the worry has stayed with me.

I have tried hypnosis a few times but it didn't work for me.

However, it might be worth a go?

or CBT?

It is mainly psychological (for me and you?) as at home I can go for hours, but if I'm in a situation where I might not be able to find a loo , I think about it and it makes it worse.

There are drugs you can take for overactive bladder which actually take away the urge- Desmopressin (sp) is one, but there are restrictions with it- like you can't drink much if you take it and it's not for everyday use.

One way you might be able to help yourself is by extending the time you go out gradually- so maybe 20 mins by car, then 30 mins, then 40 mins up to an hour and plan the route so you can stop somewhere (the 'insurance' idea seems to work.)

Thanks all. I did try CBT a few years ago during a particularly bad time but unfortunately I just found it useless. As pp said it could have been down to the counsellor, I don't feel like I gelled with her at all and i just got nothing from the sessions. I would like to think that CBT could work though as this is clearly a case of needing to adjust my thought processes and change them so there isn't such a fixation around where the nearest toilet is. In the meantime I'm finding it so hard to do anything or go anywhere that a toilet isn't accessible :(

I'm back here after a really shit (no pun intended) weekend. Been out with dc trying to enjoy the sunshine and just had anxiety, panic and consequent need for the toilet each time. Went to a park that still hasn't opened its toilets and literally was close to tears at one point as I so desperately needed the loo. It was terrifying and ended up with my having to leave early with upset dc. I can't carry on like that. I used to be able to do normal things without a second thought but over the last 10 years this problem has got progressively worse. I'm actually dreading our holiday as it involves a drive and visiting unfamiliar places and lots of walking. How am I meant to cope with that when I can't even take dc to a bloody park?!

I know cbt has been mentioned. Has anyone got any recommendations for books or online help? I don't think usual therapy sessions will be taking place at the moment so not quite sure what to do. I said I would never bother with cbt again after the last failed attempt but at this point I'm willing to try anything. This irrational fear is sucking the joy out of my life and now affecting what I can do with my family too.

Sorry you had a bad time.
I think maybe you should go and talk to the GP about this. It's just awful for you when it's affecting things to this extent.
I'm so angry that public toilets are closed in the UK. There are so man people suffering because of this.

@fflelp thank you. A lot are gradually reopening now. For me it's places where there simply aren't any. Rural areas, long drives on the motorway, or unfamiliar places where I don't know where the nearest toilets are. Also used to take a lot of comfort in knowing that there are McDonald's all over the country that you can easily run into but now they are all closed except for drive thru. It would just be very liberating to not even have to think this way.

What about getting a portable camping toilet which you can take with you in the car?
Then you'd know you always had something there if it was an emergency.

@fflelp I've thought about that but there's still this intense fear in my mind of having to use something like that in public. If we were on the motorway for example and I really had to go I'd have to get my dp to pull over and use it at the side of the road. The whole thing just feels mortifying to me.

I keep wondering if there is some sort of trauma I experienced as a child that's come back to haunt me but I have no recollection of anything toilet related. Maybe it's the fear of mess and humiliation, I don't know. It's all just bizarre and it's escalated so badly in lockdown that anything other than a quick trip to the shops sets me off. I don't want to ruin my dc summer holidays because of my own stupid hang ups.

If you open both car doors on one side of the car and situate the portable toilet between them then the public can't see you. The people travelling with you would have to look away obviously.
It might be worth a try.
There will be a trauma in your childhood relating to something like this.
I had a phobia of toilets for many many years. It is better now but sometimes it can flare up when I am anxious about other things.
Apparently when I was about 2 I had used the toilet with my Mum and when she flushed the chain, the flush was extremely loud and I was terrified. I also used to scream when I saw a stainless steel toilet at that age - my Mum thought this was related to my traumatic birth - I was forceps delivered and was taken away straight away and put on a stainless steel counter while the doctors examined me. From there I was put in an incubator. I was also trapped in a toilet at playgroup when I was three by a boy who took the wedge away so the door shut. I can actually remember screaming for the play group leaders but they took forever to come.
I think you might find that there is something like this going on with you too.

Hi OP I suffer with what I think is stress related/hormonal IBS, and I’m not convinced I don’t have some kind of thyroid issue going on that may be causing it. I have been to a private doctor who claimed to be specialist in dealing with such issues, turned out to a quack who wanted me to pay hundreds of pounds for his course of colonic irrigation and purchase his regimen of supplements. I also saw my doctor and waiting a long while for a referral with a consultant. I then waited more months to have a colonoscopy to rule out anything serious. Fortunately nothing was found though I just say I was rather disappointed and upset with that at the time as I just wanted to know what it was so I could fix it. Consultant diagnosed me with IBS because there is no text for it so once they’ve ruled everything else out, this is what you get diagnosed with. I was basically told to learn how to cope with it, no offer of meds, CBT, nothing!! I could have cried, so you have my every sympathy.

How I manage: I take 1 lopromide 30 mins before I need to leave the house, and if I am particular anxious I will take 2. I always have a stash of this in my purse, I find the capsules most effective but the melt in the mouth ones are convenient if in an emergency as you don’t need a drink. The consultant did tell me I could take codine as it would do the same job, but just not as quickly. You can take lopromide daily, I certainly did when my symptoms were at their worst, there was a time I wouldn’t leave the house without having taken it. I don’t take it daily now, just for times when I feel like I need it. I would be cautious of taking to much though, and make sure to keep hydrated when you do.

For times when I know I may feel trapped say in the car on a long journey for instance, I know already that I will panic and make things worse. In these situations I will wear those tena like pants, I’ve never actually had an accident in them, it’s the comfort of knowing they are there is what is most helpful, they are more discrete then they seem and worn quiet easily. I have only had 2 occasions where I have used them, I consider them a safety net especially for me as I absolutely hate public toilets and have trouble peeing in a public loo let alone anything else.

On journeys or if I know I’ll be going somewhere for the day or two before I will make my diet is really bland. No garlic/onions/peas/sweetcorn/alcohol/sweets etc.

Lastly there is an app I downloaded called FODMAP, and whilst I don’t my IBS is diet related I do notice that my symptoms can be easier when I don’t eat general trigger foods. This app basically gives you huge variety of all sorts of foods and uses a traffic light system to indicate low/med/high risk foods. It’s not a set thing as different foods will trigger different people but I like having it there to refer to when I’m unsure if a food/ingredient is safe or not.

Oh and sorry to go on, but I forgot to mention a reliable high quality source of live probiotics, acidophilus is usually best. I’ve head many rave about Kefir, but I’ve never tried that but it’s worth having a go.

As previous poster but without the pants!
Lovely day out with my family yesterday. Bland tea the day before, loperamide at 10pm another at 7pm the next day. 3 toilet trips in the morning to be sure, countdown on the clock to arrival at the place. Once I'm there and enjoying myself I forget about the loo issues but always check out loos and suitable bushes first!
I've been to to limit dairy, wheat, sugar, caffeine, fizzy drinks, alcohol and ibuprofen. It works.
It is so debilitating and as my lovely doc says your stomach is your second brain.

Grrr. 7am and told to limit.