How do people with IBS cope with life

I thought I had ibs for 10 years but turns out it's anxiety that then brings on the shits 😭
Cant be in a car longer than 15 mins, can't go on days out unless there are toilets it's horrid! I have had to do the toilet in some terrible places.

I got sertraline 50 mg been on for year now and it's honestly changed my life, obviously still do a poo but don't panic about it.

It's the worst thing I have ever been through.

@Lineala are seeing a dietician to help with that?
i am waiting for a referral but don’t know how long that may take, wondering if it’s worth trying it myself

@Tollystar breathing techniques definitely help reduce and control anxiety so calming down will help in that situation. The gut/brain link is scientifically proven so it's not surprising that calming your mind will calm your bowels, but having said that I don't think it's powerful enough to stop the physical symptoms completely.

I know that when I panic my diarrhoea gets lots worse (fight or flight kicks in) so it really is best to keep calm. Your situation is one of my worst nightmares. There's something about it happening in company that is so embarrassing and anxiety inducing. I avoid things like that as much as I can and have consequently missed out on a lot of things :-(

Me too re the white garments.

I'm so sick of this I started on the fodmap yesterday and yes it's challenging because it's so limited, but only for a couple of weeks, then you can start reintroducing other stuff one by one over the next few months to id the triggers. Fingers crossed . . .

Following investigations I still have no diffinative diagnosis but was told to come off gluten, dairy and now I have histamine intolerance so have to avoid those foods too. Its a pain but I rarely have an dirrohea episode these days. Bar Sunday, when the cafe had gluten cross contamination, and I had to pull over and poop in a field.... Even worse a dog walker came along! Mortified! I thankfully carry tissues, immodium (which is a total lifesaver!) And a change of knickers, trousers and socks in the car. It's not easy and I go to therapy for anxiety over food and a host of other things

@Tollystar yes I would say I’ve been able to do that too. But you can’t delay the inevitable forever

I'm interested to read that a number of you cite relaxation/anti-anxiety as a way to manage symptoms. Can any of you avert a (diarrhea) episode through the mind? The reason I ask is today I was out having a picnic with friends (MISTAKE!) and just as we were clearing up and leaving, I felt the tell-tale cramp. It's about a 30 minute drive home , my friend was driving and I was horrified that I would have to ask her to pull over at a bush (we live rurally). I definitely had the cramps and that feeling that if I allowed myself, I would go. From cramps to going, I usually get max 15 mins....

But I remembered someone upthread (sorry, forgot who!) mentioned breathing in through nose, out through mouth, so I lay back in my seat, closed eyes (pretended I was dozing) and did the breathing, and managed the journey home (then the predictable happened). So I wonder if I was able to delay the episode through relaxation, and if this is a thing?

I tried the low fodmap diet on the advice of my GP but I lost a lot of weight due to struggling to find anything to eat. That seemed worse for my health so I had to give up.

For those of you feeling like you would like a colonoscopy I would see your doctor again and be quite insistent - tell them how much effect it is having on your mental health.

I have a wardrobe full of lovely white summer trousers, skirts and Bikinis that I've bought but end up being too scared to wear.
I'm regularly running late for work because my stomach decides to start gurgling as I'm walking out the door ever tho I get up at the crack of dawn to try and avoid this happening.
I used to work in an office which had one windowless, sliding door toilet on the main hallway for 3 different departments. I left that job for that reason.
I can't ever go to the early morning gym classes for this reason so am stuck going mid evening, even then I have to cancel often.
I want to try low fod map but I've look at it so many times and it looks like there's next to nothing you can actually eat. It looks so complicated I wouldn't know where to start. I feel so down about it all the time.

I've never been offered a colonoscopy, dr always says it's just IBS.

Someone I know had ulcerative colitis which, I believe, has a lot of similar symptoms. She lost so much weight with all the diarrhoea, sickness etc and she’d be in agonising pain (literally screaming) during a flare up. She ended up having her bowel removed and now has a colostomy bag. It was a massive decision but she says it’s the best thing she’s done in a long time. She says it doesn’t really hinder her and once she got used to changing it, it was fine.

@appleCustardy yes you absolutely need to push HARD for a proper colonoscopy. Bloods won’t be telling the whole story at all and with symptoms that severe someone should be taking a look. Has she got any blood in her stool or when she wipes?

i was like her and only diagnosed aged 19 when my parents finally paid privately for the colonoscopy. It turned my life round being able to get the proper treatment and meds. But I was bleeding a lot too. Doctors had always brushed it off as IBS!!

I hear you with the lying on the floor sweating and shaking! The cramps are horrendous.

I know what you mean. I now carry or even wear incontinence pants for a long journey as it is a bit of a mental security blanket. Of course stress and nerves make it worse. I told a consultant once " well you would be nervous too if you were going to shit yourself in public". See my other post about the SEHCAT test.

. I am now on daily sachets of Cholestryamine which i would say are about 80 - 90 % effective. If I have to go somewhere early in the morning or on
a plane journey I would still take a couple of Immodium. Basically your food is just dropping through your system. I believe about 80% of people who have no gall bladder develop this.I would suggest you ask to get tested for this.

I had my gall bladder removed years ago and have had years of this. I was recommended by a new doctor to take a test for bile malabsorption and it came up positive. It's called a SEHCAT test. I am now on daily sachets

I have mixed too - I get bunged up then my body goes into painful overdrive to clear it and the only thing that stops the cramps and pain is immodium so the cycle starts again.
The cramps are as bad as labour pains and i often end up lying on the floor so that I don't pass out as I'm sweating and shaking.
I'm off out tomorrow so will take immodium to be safe.

I haven’t had a full colonoscopy. I had some bleeding last year, my doctor said it was “probably” just haemorrhoids. My Dermatologist worried it might have been caused by my skin meds so she referred me for a flexible sigmoidoscopy which did find just haemorrhoids, luckily.

as for the IBS, i flit from diarrhoea or constipation (I seem to be only one on this thread to have mixed?) my bowel habits change all the time which is one of the things to look out for with bowel cancer

@appleCustardy that is horrific for a 12 year old to go through. I hope the doctors are taking this seriously

The stand up comedian made a big point about how lockdown had affected everything and how happy he was we could now watch him live and not just on Netflix. Well, I won’t pay £300 to watch him live again, and honestly don’t think I’ll be bothered to even watch him on TV anymore.

i know exactly when my problems started. I was 15 and was very ill with pneumonia. I had strong penicillin (which I was severly allergic to it turned out), and after that I basically couldn’t eat anything. Especially not meat, I remember trying to tell my parents that I thought I couldn’t eat meat anymore, but they thought I was being ridiculous.

No we begged the gp to do some bloods which all came back normal and a stool sample to check for infection or inflammation which was also normal. She is having an US scan soon but no other tests have been mentioned maybe I should ask directly?
The 4 month flare up was so bad and I really didn’t feel there was any help we just kept being told to try upping the imodium (didn’t have any effect at all) so after 2 months we stopped and tried probiotics and rehydration dissolvable tablets

@appleCustardy has she ever had a colonoscopy to rule out chrons or colitis? Sounds like it could be one of those and not ibs.

I second those who have suggested a low FODMAP diet. It utterly changed my life. Now if I have flares they are mild, manageable and broadly predictable (i.e. if I've eaten something unavoidable that I know has small amounts of fodmaps in it).

A few years ago my life was exactly as you describe. Now, aside from low key sensible precautions like eating very safe foods ahead of e.g. a flight, I don't think about it for the most part.

People panic at it because it looks so restrictive. In reality you can probably reintroduce a lot of foods gradually and to be honest once you understand your triggers you go off them anyway. I used to think I'd miss bread so much. Always told myself I'd have a "cheat day" from time to time. Never happens because no bread is worth dealing with those symptoms it turns out.

You ideally need the guidance of a dietician. Or, as a minimum, to download the official app which had a database of foods and a traffic light system. Don't try and do it from an internet list, it's too complicated!