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.

I felt great or days after the prep - it was almost worth the colonoscopy!

Not had a chance to read the full thread yet, but can't believe how many of us are in the same boat. Has anyone else who struggles with 'urgent' ibs flare up, NOT had a colonoscopy? I've been numerous times to doctors about my ibs but never been offered a colonoscopy. Obviously with everything Deborah James has spoken about, it makes me nervous not having had this one test that would at least help me relax a teeny bit. IBS is a major pain, but the anxiety of not ever having had my bowels actually looked at internally, makes me anxious.. which is of course one of the triggers.

I tend to take buscopan most days, especially if im going out. I've never tried immodium and am worried I'd become reliant on it if e.g. going to work.

Has anyone tried silicol gel?

My dd (12) recently had a severe 4 month flare up. Couldn’t leave the house. Imodium didn’t work. She was in agony and crying crawling to the bathroom at night as was exhausted and wanted to sleep but was going 20+ times a day it was hell. For any drs appt etc she had to wear a pull up she was embarrassed and it was horrendous. Not 100% now but a lot better it took so long we are dreading any more flare ups. She’s been diagnosed with IBS for years but it’s getting worse

No, I don't think I would have either. But I would hate to never go to the theatre again.

Thankfully I have never had a public accident, but honestly it's so shit that there's no better mechanism of managing it - that shouldn't be an "oh aren't I lucky" moment for an adult - it should be the norm for every adult. I really hope research improves the treatment of IBS - I think people who don't have it fail to comprehend how debilitating it is.

Yes we have really been frustrated at the lack of help. Just being told ‘up the dose of imodium’ which still didn’t work and having to wait months and begging to see a gastroenterologist 😞

I’ve had ibs and ibd for years . I follow a low fibre diet and no alcohol and that works perfectly for me. I’m also on meds for my ibd . For years I used to avoid everything and now I can live my life again.

I have mild ibs and take Biokult which is a prebiotic in tablet form. It helps a lot with my symptoms which are bloating and very painful cramps. I don’t take them every day just when I feel I am beginning a flare up. Note: this is not a doctor’s prescription, a friend recommended them to me and it seems to be enough for now.
it might be worth a try. 💐

Does anyone else get urinary retention during a bad flare up ?

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!

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

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

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.

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.

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

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

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

@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!!

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.

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

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.