How do people with IBS cope with life

Mine is really unpredictable but I found buscopan helps. GP recommended it and while it doesn't stop the symptoms it reduces flare ups from days to hours... although currently on day 5 of pretty horrendous pain and bloating so bad I haven't slept more than hour.

I have the added delight of being horribly prone to UTIs and an IBS flare up almost always triggers one and the other way round.

The pain gets so bad I've fainted from it. Ive worked out too much protein or dairy can trigger it, stress and hormonal changes too. But other times it comes out of nowhere. I really hate pooping in public toilets too so if I have an attack when out and about it's so stressful (which adds to the symptoms!). I avoid going anywhere unfamiliar around my period and can't drive if I'm in pain because I'm afraid of fainting again.

Your post is so relatable, OP.
I have mine relatively under control by following a low fodmap diet most of the time. I tried reintroducing foods but without much success, so have just accepted it as my new norm, but just follow it 90-95% of the time. I always carry loperamide and if I have plans where a flare up will be bad, I'll take it before the pooing has a chance to start. Stress is a big trigger but unfortunately so is excitement so something like a gig I'm looking forwards to, or a date, is likely to see me on the loo loads if I don't loperamide first.
I also quickly got over any squeamishness about talking about poo. If its a really bad flare up, if needs be I'll let people know if I keep needing to rush away from my desk, or while I'm distracted while I'm with friends as I'm worried about where a loo is.

I try being aware of triggers. I always carry medication with me if it gets bad I take buscopan. I had a bad day today but I ate sausage casserole yesterday. I remember going to the seaside and having fish and chips with my children and then rushing to the toilet with them both in hand felt awful and it's so embrassing in public. I never have a drink if I'm at work the next day as it goes through me.

Mine has improved as I’ve got older and definitely when my periods stopped with the menopause. I don’t have particular triggers but if I was going to an event or out for the day, I’d eat plain food beforehand and double my buscopan dose. That seemed to work and the fact I wasn’t worrying helped as well

My husband suffers terribly with IBS and until I ment him I never knew how debilitating it was. He doesn't seem to have any obvious triggers although he has found lately that overeating big meals makes it worse other than that it can be triggered by stress/ anxiety etc. i do feel for him as it really impacts his life. My heat goes out to you all but I'm reading your posts with great interest xx

Loperamide (immodium) is my freind for days out or meals out. I have alternating IBS-C then I get excruciating painful cramps that make me nearly pass out when trying to go and then have a bout of IBS-D.

I avoid certain trigger foods like high fat/creamy foods while out.

If I'm out I'll take an immodium at the first cramp or gurgle.

My younger sister has suffered with this since her early 20s.

It’s always best to have tests to rule out any underlying causes as the symptoms can also be the symptoms of other conditions.

She wears Tena pants if she’s going out for the day and there’s a risk of accident, but thankfully that has only happened the once.

I forgot to mention. In the "in between" stage of getting better but not entirely better, Buscopan helped hugely. It was fantastic for getting rid of the sense of "feeling" my insides that I had when walking around otherwise and that was what made me anxious. The less feeling, the less anxiety, and a positive loop occurred where I felt better about it all.

I take (probably too much) codeine as it’s the only thing that controls it.
It seems to be getting worse as I get older and more foods set me off. The slightest bit of stress and I’m straight on the loo.
If I have to travel, my body sort of shuts it down and it’s the only time I go more than a day without ‘going’.
The first thing I google, when going anywhere new, is where public loos are.
I’ve tried giving up sugar, dairy and cutting right back on carbs but it doesn’t seem to make much difference. I’ll be fine with say, tomatoes one day, then the next time I’ll be on the loo with cramps and orange diarhrrea within an hour.

I had it very badly (loperamide, carrying a RADAR key, the works) and managed to clear it up by cutting out certain foods, taking a special antibiotic to resolve SIBO, and then taking a specific probiotic religiously every day since. It's changed my life.

I suffer with IBS and I'm never without loperamide. A pack a day sometimes. If I didn't, I'd probably struggle to function with life tbh! Anxiety about it definitely makes it worse.

I don't have IBS but I have problems with my digestive system that were diagnosed just before lockdown and coming "out" of lockdown has been nightmarish. The anxiety of not being near a loo is dreadful. Sympathies to all XX

I used to have terrible IBS (weirdly disappeared after IVF/having children) and remember the poo anxiety clearly.

My way of coping was to take two Immodium on the morning of any day out, then keep a packet with me to top up if needed. Spare pants and wipes in the car. Live in a village so only use public transport heading up to London, so would find a seat next to a loo on the train.

The worst part was my job - a primary school teacher. I couldn’t just leave my class to dash to the loo, so had to make sure all members of staff knew about my IBS and understood that I might need to pin my classroom door open and ask the teacher next door to supervise at no notice. Oddly, not a single child I taught ever questioned these occurrences!

I’ve also heard that codeine is great for slowing down the bowels. One of my sisters gets prescribed medication to regulate her IBS, but it’s much worse than mine ever was (her year out travelling was a challenge by all accounts!)

I was diagnosed with IBS when I was about 13 and suffered mainly with severe bloating until about 2 years ago. I was diagnosed with hypothyroidism and started to take thyroxine, since then my 'ibs' isn't really a thing anymore 😊

I take loperimide in the morning if I'm doing a 'big day out' and I think there's any chance of issues. I haven't always remembered, and have, on occasion, had to go for a wild poo - never great. If I remember, it does help head things off.

There are careers I couldn't consider (teaching, for example), but I have quite a few friends with a range of long term conditions, so I'm aware I'm not alone. That doesn't make it fun though.

When down the functional medicine route: with a qualified doctor who is additionally a qualified FM doctor, rather than a 'practitioner'. Had my gut biome done which shed a huge amount of light on the causes of my IBS. It's expensive but worth every penny. It has changed my life.

Mine is more stomach pain and awful trapped wind symptoms. I can't wear anything that does up or sits across my tummy as it gives me awful tummy pain and have to buy clothes like mom jeans or leggings in a size too big which is always a faff as they start to slip down. I've tried a lot of elasticated waist clothes and even in those I have to size up too 🤷‍♀️ I often wear baggy shorts, leggings or floaty dresses so nothing is on my belly. Thank goodness cycling shorts and oversized t-shirts made a come back and I can roll legging waistbands down to my hips so they aren't across my tummy.

Fortunately mine doesn't cause too many bowel problems except gas but if I was to wear clothing on my belly for a little while, I'd get crippling stomach pains like trapped wind. I get awful bloating too which is worse in some situations, for example I can guarantee I'll get bloating and tummy pain on a night out (regardless of floaty clothing) but if I eat out in my own house there is no issue? I think I get a bit anxious about the tummy pain before it starts and that probably doesn't help either.

Add in incontinence from DCs and I'm a walking mess 🤣🤣

Yeah I have quite bad IBS and just been diagnosed with diverticular disease too. When it first kicked off about 15 years ago I did let it rule my life but now I think fuck it, I'll cope whatever. Don't get me wrong I know where all the toilets are, always have tissues/wipes on me and have had a few close calls, but I'd go on the hike if that's what I wanted to do.

Just wrote a really detailed post and lost it, gah.

Long story short: Have a look into the low FODMAP diet - the complete low FODMAP diet book by Sue Shepherd is excellent. OP, I would recommend this too.

You may well find you are intolerant to a small subsection of the FODMAPs and it's totally life changing.

OP, in addition to that I'd recommend getting yourself some medication (e.g. mebeverine, buscopan) prescribed by the GP and take it religiously. Should help your symptoms settle and help your anxiety. You can also buy loperamide off the internet very inexpensively which can be a lifesaver.

Finally, buy a radar key - 99% of the time I don't need it, but the 1% I do it's a lifesaver. They're a few pounds on Amazon.

I’ve suffered with “urgent” ibs since I was about 19. I’m now 41. It started on holiday in Greece, I was playing table tennis with my boyfriend and my tummy tumbled and suddenly I thought omg I’m going to poop myself and I literally had to run to our apartment…! Since then - over 20 years now- I’ve had every single test and tube up and down me known to man - and yes I’ve got lots of autoimmune issues (Addisons, lupus etc) but no
reason as to why every month or so I will suddenly HAVE to run to the toilet with next to no warning. It’s insane.

I do try not to let it limit my life too much. When I was younger I spent years avoiding things and googling the nearest toilet everywhere but I’ve come to realise I can’t live like that. I still wouldn’t go on a remote hike (!) but I take a Cocodamol 30/500 if I’m going to have a busy day - my
Gp prescribes them for me thankfully as the Codeine slows down my bowel and they also help my lupus, and I just pray for the best!

I’ve had a few very near misses (!) but thankfully no public accidents.

I do also have a radar key - you can buy them from eBay - so in an emergency I could use a disabled toilet and I find that comforting.

It is a really horrible condition to have.

I was diagnosed with chrons when I was 20. I’m now 44. It’s no longer as bad as it was but I have built an encyclopaedic knowledge of public toilets. I also charge into cafes etc and just ask to use the loo. I buy something on the way out if need be. I do not eat in the morning until safely at work. I would always drive myself somewhere if possible, that way I can divert if necessary. I occasionally do have accidents, but only minor. A small leak etc. Its just my life. It’s not ideal but it’s the only one I have. I also speak openly about what’s happening so people understand. You have my sympathies. I don’t think anyone can understand unless they’ve been there. ❤️

I've a few things IBS part of it and to be honest I either make sure I'm near a loo... Train travel not bus etc.
Luckily our family's days out. Are things like cou try walks so that makes it easier

I can so relate to this nightmare

I need extra time in the mornings to use the toilet a couple of times. I cannot just eat breakfast and go to work.
I have to keep active so my stomach doesn't bloat. Wouldn't consider doing better at work as it would mean meetings and sitting down for longer.
If I'm out for the day I try not to eat too much.