How do people with IBS cope with life

I had my first horrific episode back in February. Unfortunately I was away from work staying in a hotel. I have never been so ill in my life and it came completely out of the blue.

When I finally got home I tested +ive for COVID.

Since then I have had 4 more episodes ( not as bad thankfully) and eventually spoke to my GP who tested me for everything under the son and finally diagnosed IBS.

I am now ruled by my bowels to a certain extent and would try to always have a loo near at hand .

My IBS is almost constant, with flare ups merging into each other, and it does rule my life, When we had work done on our bathroom, I moved into the local Premier Inn for a week. The builder said "If you need the loo, just ask" I don't think he'd have got much work done! Last year I had to get excused from Jury duty, something I'd always wanted to do, because I'd never have managed.
If I'm going out somewhere I don't eat, because eating means four or five trips to the loo in the next few hours.
I'm very open about it, because it's less embarrassing in company if people know you're likely to keep disappearing. And I always carry spare underwear and baby wipes and nappy sacks.

Sometimes surprising foods can be triggers such as apple. It's worth finding out what the triggers are

Also Mexican food set me off badly...the green stuff so avoid that. Tbh I can go weeks no problem..the water on holiday reminded me I've stick got it ..

i know my triggers but when you need to go you need to go and I will use disabled or men's toilets if needed. I know the signs. I'm not embarrassed...it's a medical condition and nothing I can do about it. I have if a queue in a toilet explained quickly and I found people vvv understanding and will let me run ahead if needed..bread major trigger for me, milk and being on holiday a certain type of water with high calcium set me off badly!

@ButterfliesnWaterfalls
If yours started after your gall bladder operation it could be bile acid malabsorption [ BAM ]. I had my gall bladder removed around 15 years ago and then had what I thought was IBS for years. Four years ago I was finally diagnosed with BAM after a sechat scan. Now on medication for life, but most of the symptoms have now gone.

I'm like this and always allow time for breakfast and the digestive processes. It's only a problem when I have to get up early like going on holiday (like today) but we'll stop at a services for coffee and I might be able to go then. My trigger is mainly wheat bran and soya and my symptoms are pain and bloating mot diarrhoea. Buscopan helps but paracetamol is OK.

Don’t let it rule your life OP.
like a PP said - try not to care. I know it’s hard though.
things that have helped me (though not cured me!)
Reducing stress
probiotics - like another PP recommended - the biokult ones are great. Two a day to start with
Imodium for when out and about.
I cut out lactose and onions too.
cutting down on alcohol helped (need to cut it out completely but that is hard!)
also I know I need to cut down on gluten - again difficult for me as I love carbs !

I got so desperate I went strictly gluten free for maybe 6 years. I no longer I have IBS. I haven’t had an episode since a few months into going GF and I could always trace back to eating something by mistake. As I got better about being careful, I stopped having episodes. I had severe pain + diarrhea. No particular reason to suspect gluten other than DH nagging me to try giving it up.

I was celiac level strict though, we binned all our wooden utensils, had no gluten in the house etc. I never had something containing gluten as a treat etc. it was easy to stick to it because it seemed to be working and I never wanted to feel like that again! I’ve been eating gluten normally though for about 3 years now.

Just to say that NHS guidelines are for people to be tested for coeliac disease before being diagnosed with IBS. It is autoimmune and particularly found with other autoimmune disease such as hypothyroidism.

@PinkArt the FODMAP diet was incredibly helpful to me too, I was more fortunate in the sense that I identified specific triggers and was able to reintroduce a lot.
Are you on supplements or have you seen a dietitian? I ask as I read that the low fodmap diet can be too restrictive for the long term

@saltwaterandsuncream have you tried the FODMAP diet? It highlighted to me that onions were a trigger for me. Onions! I had already been gluten free for 6 years at that point then had an almighty flare up that the FODMAP diet helped me get through

Mine cleared with probiotics while on a good ( low sugar) diet .

I have ulcerative colitis and it was a horror until I got on the right medication. Even now I have to get up early and eat something to give me time in the morning for a few trips to the toilet.

I don't make a habit of it but yes I have shit in a field before.

I walk a lot.. I have a special poop trowel that's designed for walkers that need to poop.. it's got its own bag and a little stash of toilet roll with it.

I may not have done much with my life, but I can say, I have popped on a hill in England, a hill in Scotland and a hill in Wales.. 🤪

My best friend sounded similar to you .

Baby wipes and nappy bags in a handbag at all times . She's had emergency poos in horse boxes , bushes , all sorts but we are equipped .

She thankfully has made progress despite initial medications having no real benefit ;

• hypnotism ( look it up !)
• acupuncture
• cut out all dairy

I always carry a little zipped makeup purse in my bag which contains a bottle of VIPOO spray, Buscopan pills, Imodium instants, painkillers and wet wipes. Very useful in emergencies!

Generally though I manage as I’ve identified over time what and when to eat. Appreciate this doesn’t work for everybody though.

Im struggled to up load the screenshot so writing the list - long words!
For @FloorWipes and anyone else:

carboxymethylcellulose
carageenan
Maltodextrin
Polysorbate-80
Titanium dioxide (just banned in Europe incidentally)
Soy lecithin
Xanthum gum
Aluminosilicates

This research article points a LOT of evidence at additives wreaking havoc on our digestive systems:
ncbi.nlm.nih.gov./pmc/articles/PMC6567822/

I have Crohn's and have learned not to care.

In towns that means I'm totally shameless about going in bars and restaurants and cafes just for the loo. Yes, there are few proper public loos around nowadays but there are other facilities.

If I can I'll buy a drink or whatever after, or make it a place I go to at other times so I feel less bad about not being a customer. But if it's a choice between shitting myself, or using a loo I'm technically not supposed to, or spending my life at home... I know what I'm doing.

Tips if you're embarrassed in public loos: if you put loo roll in first there's no 'plop' noise. Also, do a 'courtesy flush' where the flush disguises any other noises.

I don't make a habit of it but yes I have shit in a field before. Yes it sucks and I hope to never, ever do that again. But again, I would rather live my life and run that tiny risk than not do things that make me happy.

I'm aware I may sound like a lunatic but I honestly think if you can just learn not care it is so much better. I'm never anxious or nervous about it, don't plan ahead, don't not do things. I used to do all of the above but for me the anticipation and worry was worse than needing the loo and since I've let that go it's better.

It's both validating yet sad that all this sounds so familiar...for years I felt guilty that my DH must get so frustrated that I hesitate when he suggests going out for the whole day with no real plan on where to go, or my anxiety about caravan and motorhoming holidays (or any holidays at all), or my nervousness about long journeys with no scheduled route or staying over at somebody's house as a guest. Having utterly unpredictable cramps, 100mph poop and occasional waterfall diarrhoea that cannot be contained (happened to me at a WEDDING during the speeches!) on and off for 30 years has leeched all the spontaneity out of me.

It's only recently that I actually started feeling angrily envious at all those people who wake up, have breakfast, poo, and go about their day without a care for where the next toilet might be.

How have other IBS-D sufferers coped with Covid diarrhoea? I've had it twice and it takes bloody ages to get things back on an even keel, horrible. I wonder if non-IBS sufferers go back to normal more quickly?

Also, do any of you find that if you go too long without eating (like 36hrs+), when you do reintroduce food it causes a catastrophic flare straight away? That's what happened at the wedding, I hadn't been eating to avoid problems on the lead up, but felt obliged to eat the lovely food on the day. Sadly it only stayed in my body for about an hour.

I've had a flare the last few days.
Drains me, no energy at all and needing 5-6 loo trips at.very short notice.
Dr gave me merberverine, which I've spelt.all.kinds of wrong.

It makes life hell when it kicks off. I don't like leaving the house tbh. Rushing to the loo in Tesco and leaving the smell behind is kind of embarrassing.

I'm still up now at gone midnight as I can feel the gurgle, I'll be exhausted and sleep mostly.tomorrow.

So yeah, how others cope, I don't know, I just try and get through it,.drink lots of water, take the meds, don't stray.too far from my toilet.

Just following thread as I have severe ibs really struggling to keep control of it. It's so draining having to think far ahead for a day out. Will be interesting to see how others manage it

I mostly manage my IBS with loperamide prescribed by my doctor ( often sold as immodium). I take two capsules every morning with breakfast. I keep a pack of them in my bag when I go out too, along with packets of tissues.

I have to know where toilets are going to be whenever I am out too. If my outings will involve eating I take a further couple of loperamide capsules before the meal and always head to the toilet before leaving the café/restaurant. It's not perfect, and I can and do have some close calls, which do make me very anxious.

Lockdowns and the days and weeks immediately following them were a nightmare because far too many places seemed to think that Covid meant people no longer needed toilets when out and about and closed them!😠

Have you asked your doctor to run some blood tests to check for anything that might be contributing to it? Conditions like an overactive thyroid can be a big cause. My IBS did improve a fair bit (though not entirely, I do still get some flare-ups) when my own overactive thyroid was diagnosed and treated.

You have my sympathy. It is horrible and it does knock your confidence in going out.

Hi, IBS-D has blighted my life for over 35 years. It affects where I go when I go and the job choices I have had to make.

I have been examined and probed and no explanation has been found.

I live on loperamide (daily - with extra tabs when it's bad) and codeine ( which I try to only take in the build-up to a planned event)

When we travel or go out I plan where toilets are in advance and it almost becomes obsessive that I need to know timings and locations. This must be hell for my long-suffering wife, but she is incredible, especially if I just have to disappear in the middle of a shopping centre for 20 mins to deal with the sudden and uncontrolled gurglings.

You have my sympathy and I hope you find a way to manage.

Yes the pain is awful isn’t it. It’s almost as bad as the pooping itself, which is almost a relief in a way when it comes.

Ive been out in restaurants before and the cramping and pain has started and I’ve had to sit there sweating and smiling through it all just desperate to get home. A bit like that scene in Along Came Polly where he’s eating a curry and suffering the worst ibs imaginable but can’t / won’t tell her. So relatable!