How do people with IBS cope with life

[fedupfrazzled]

I have fairly mild IBS in that it doesn't happen often but when I get a flare up I get urgent diarrhoea that can last a few hours. Although the symptoms aren't pleasant I can cope with them, what gets to me is the unpredictability of it. I would say I'm a bit of a control freak and like to be prepared but when I get a flare up it comes on so quickly and I have no control over my own body. I hate it.

For this reason I have become very selective about where I will go and what I'll do. I've found myself making excuses not to go to places where I can't get to a toilet like recently when a bunch of my old college friends invited me on a hike. I felt gutted to miss out but I couldn't risk an episode happening in a remote place like that. If we go on motorway journeys I have to know the route and where the next stop is. It's getting quite obsessive.

I think the anxiety is actually making my symptoms worse too. I'm constantly thinking about it and then I have to go. I wish I could just get on with life without it being something that's always on my mind. My symptoms aren't even that bad/regular but because I've had one or two near misses it's become a huge fear for me now.

If you suffer from IBS how do you navigate life? Do you just have a 'fuck it' and get on with life attitude? I so wish I could. I even tried CBT for a while but it didn't help.

Do any of you struggle with depression? I'm trying to find my way out of a bad bout of ibs and now feel utterly miserable about it. Any help appreciated please.

@unicormb oh I'd be sorely tempted to hide some laxatives in his food now and again 🤬

I had the same thing! The prep was such a horrible experience, but it made me wonder if it would be worth doing it every now and then as it seemed quite beneficial.

Thanks for this thread, on the back of it and after a truly horrible weekend, suffering, ( and I have had this for at least 3 years hand have just been using immodium and buscopan ) .. Anyway I finally contacted my Doctor, but armed with exactly what to say.. shes now given me Mebeverine.. only taken two so far, but I have hopes...

I wouldn't have a partner that acts that way after the first time they acted that way.

Thats so sad @unicormb .. luckily mine is very understanding... But it has meant that I have become so overanxious avoidant about any intimacy, as well as going out.. I so want to get back to what I was...
I had strong antibiotics for three weeks last after tooth implant surgery and they really made me sick. Since then the ibsd got so much worse..
Kefir just makes it really bad, but I have ordered some probiotics now as recommended.. expensive but I have got to the stage of giving anything a go now .

I always have a diazepam to hand incase I get stuck on the motorway (as a passenger) which immediately takes the anxiety of an IBS attack away. But it really does impact days out, where we go. It's utterly embarrassing. I am also prescribed codeine (for another condition but it also helps my IBS) and citalopram.
Having the diazepam to hand really helps, knowing it will calm me down if an IBS attack does happen.

I also take Movicol everyday to keep my bowel moving regularly, it's very gentle. I've had to come to terms with the fact I may have to do a 'wild poo' and have warned my partner about what if we get stuck on the motorway and I have to poo etc. it's so mortifying.
When I get the urge to go, I just can't stop it, it's excruciatingly painful.

I have collagenous colitis so can relate to this.

Just started to use Heathers Tummy Fibre which is acacia senegal which is a herbal relief for IBS and diarrhoea as well as constipation.

Definitely worth a try. From 6 times a day to 1 or 2 and hugely decreased urgency. And firmer. 👍. Not perfect of course but a hell of an improvement.

I don't cope with life. My ibs controls and dictates everything. I have horrendous anxiety around it. Daily. I read up on it constantly. Only the other day I found out I could get a radar key. I hope that will calm my anxiety somewhat. I feel like mine is mostly linked to my anxiety. The ibs makes me even more anxious, making a flare up more likely which makes me more anxious so it just goes round and round. Eating too much also causes it ie going out for a meal and being tempted to have a dessert aswell. That never ends well! I have had so many narrow escapes and a few not so lucky moments, fortunately I've been on my own and not been in a crowded places. I went to the doctors years ago. He gave me some pills I think they were called coliflax. They made no difference so I never went back. I use loperimide and probiotics now but it's still bad. Travelling is probably the worst thing for me and we go abroad next month. The closer it gets the more worried I am. Watching this thread with interest to hopefully pick up some tips. I honestly feel like I'm the only person who suffers like this while the rest of the world walks around without a care and i so want to be like that too. Im sorry to hear of everyone elses struggles with it but so glad to know I'm not alone.

Largely cured mine. Everyone’s different but after years of not being taken seriously and being a daytime ‘faster’ on codeine and Imodium …
I fasted for a couple of days and stopped my meds, had a good clear out then flooded my system with ‘friendly bacteria’. I then started a diet consisting largely of IBD friendly foods and stuck at it . I occasionally cheat and have a curry or a Chinese if I know I’m home the next day but I only get cramps in the morning. Will never really know if the diet or the probiotics did the trick , I just know I’m usually fine now. If you wanna go somewhere and you’re worried I suggest just popping some pills and sipping sweet drinks and eating crisps. You don’t have to eat bulky foods to sustain yourself every day, salt and sugar will keep you going without giving your guts anything to get excited about :)

I had a really, really bad flare up but had booked to go to a stand up comedy show with my family for my birthday. First time going somewhere nice together for years. I didn’t eat anything at the restaurant before, judt had water just in case.

Of course I got severe stomach pain and was sitting there with anxiety, sweating and waiting for there to be some sort of break so I could try and go to the loo without disturbing anyone. And not to draw attention to myself from the (very famous) male stand up comedian. Finally I just had to go, I was near the door and when he turned around on stage I left. On the way back I prayed that I could just slip back into my seat in the dark. But of course not. Search light on and the comedian going on and on if I had gone to the toilet and what I had been doing, if I had taken a poo or what. Thankfully he couldn’t see exactly where I was sitting, and my poor teenagers whispered that I should not respond and he might stop. Everyone in the arena laughing their heads off. I nearly cried. I thought that if I didn’t engage he would stop, but it went on for the rest of the show. I honestly felt like it was all a bad dream with everyone laughing.

I’ve had IBS for 25 yrs, and it is limiting my life. Sure I can laugh about it, but I had been in severe pain for weeks and all I wanted was to have one nice birthday out with my family. I was just so sad, and ashamed in front of my family. I went to bed by myself just crying when I came home.

Reminds me of the time I had to run out of the National Theatre during an Alan Bennett play @Boomeranga because I had 'the rumble' and knew I had two mins, max. There are no aisles at the National Theatre. I had to make about twenty people get up out of their seats. I was too ashamed to go back in.

@unicormb I wish I hadn’t gone back in. I had a bad feeling it would happen. A waste of £300 tickets for having a horrible night out. At least I had only five seats to the door, no aisles sounds like a nightmare. I wish I could laugh about, but I can’t.

Hi @saltwaterandsuncream ,

I'm really interested to know what medication you take? I take Loperamide on a daily basis but wondering if you have been prescribed something different?

Many thanks.

Lopermide is my friend too. I hate going out for meals, city breaks and I tend to use ibs as the excuse.

i eat boring food.

Does anyone take colpermin ibs? Was prescribed this but wondering when I should take it.

Re the seats and theatres - probably worth calling the box office when booking as an aisle seat would be a reasonable adjustment in case of a disability and I think most places would accommodate this.

Yes, I hadn't thought of this prior to NT shitgate.

@fedupfrazzled i could have written your post. Two things that transformed my life.

first way citalopram for the anxiety. I now take 20mg a day and it’s been a wonder drug for making me more chilled. Like you, the more I worried the more I actually had a bout of diarreah

secondly Imodium. You don’t want to be taking it daily but for example your friends going on a hike it’s perfect for that security and peace of mind. Take some about an hour or 90 mins before you want to be ‘safe’. It totally bungs me up and I have NEVER in 20 years of using it had an accident. And I’m like you, obsessive about routes and avoid certain situations and turn down things without a toilet. I take 2 Imodium tablets.

breathing also helps. If you find yourself in a panic trapped on a motorway then breath in thru your nose for 2 and out of your mouth for 3. Try it now. Forget everything else and count in for 2 (nose) and out for 3 (mouth). Keep doing it and it hugely helps control the anxiety in a horrid situation.

😂 Same here. Never again.

I’ve tried this and all it did was made me feel like I had a minty / tingly bum every time I did a poo! Way too much information but there you go.

I’ve had it for a number of years now, I’m 49 and it started about 6 years ago in earnest so the start of peri and some big family upset / bereavement.

I’ve had a few embarrassing episodes of uncontrollable diarrhoea, usually after eating large rich meals - it was like a kind of dumping where o got an urge and it just poured out, no control.

lockdown was good as I didn’t have to worry about leaving the house but going back to the office was awful as the more anxious I got the worse I was - having numerous dashes to the loo and once completely soiling myself in the office (managed to get out and go home without too many people noticing).

GP was fairly non pluses, had some blood tests and a poo samples which all came back normal.

I generally manage by cutting out the numerous cups of tea a day, smaller meals and not overloading my stomach.
If I’m going somewhere I take one Imodium instant which melts on the tongue, it’s enough to generally slow things down enough to give me time. I still often need the toilet / have anxiety about needing the toilet which then makes me have urgency and I live in fear of being caught short.

I’ve found a daily anti histamine has helped calm my bowels so I don’t get that internal ‘itch’ that makes me feel I need the loo all the time, no or very little breakfast.

Alcohol will settle my nerves so I usually fine I’m ok once I’m out and having a drink but I will almost always need a nervous poo minutes before leaving the house and almost always get sudden urgency in a shop or anywhere I’m browsing or wandering around.

Its horrible and I’m envious of my DH who gets up, goes to the loo and is done for the rest of the day

Aw that's really sad, i would have been horrified.

@GG1986 Thank you.