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.

Anyone with IBS or IBD can use a disabled loo if that takes the stress out of using the toilet in public. I struggled with my crohns for about 20 years. Started using the disabled toilets 5 years ago and it's made life much easier.

I eat about a dozen eggs a week to keep my innards under control. I always have 3 eggs on a Sunday to set me up for work on Monday, then 2-3 a day while I'm out to ensure all is ok. Couldn't cope without eggs

@user656709 I take multivitamins but I don't actually find it too restrictive these days, I guess I've got used to it. I eat a lot of meat, fish and veg and just have to think about what I put with them. The onion and garlic thing is probably the biggest issue when eating out but I know they're horrible triggers for me so I avoid them as much as possible. I did see a dietician for a bit but she really wasn't that helpful and I stopped going when she suggested going back to 'normal' eating and cutting out just diary or just wheat etc. No way I could cope with the poo and the stomach aches that would have brought.

Mine is so severe now I definitely wouldn't be able to do the job I did pre kids. It's been 21 years for me and I'm still at the mercy of it. Have a gastro apt with NHS in Sept, over the phone, and will be begging for my life back.

I have not officially been diagnosed with IBS (does someone need to actually tell me, “yes you have IBS”?) but I have had a blood test for coeliac which was negative and I’m waiting for a dietician referral to try low FODMAP.

I suffer with a mixture of diarrhoea and constipation, I flit between the two sometimes days or weeks at a time. The cramps are horrendous and the painful urgency to open my bowels every time I take a bite of something to eat. And the bloating - I look pregnant!
I’m under Gastro at the hospital but never actually seen the doctor face to face, my GP just prescribed mebeverine this week, again that was over the phone. I don’t know how long it takes to start working but nothing so far.

I’ve not been able to work out my triggers so far but interesting a lot of you suffer with onions, that seems to be a staple in most of my meals.

I am trying to lose weight as well and not really getting anywhere with that

This is exactly what I am like. I chee Rennie like they are going out of fashion.

I get so bloated I look 9 months pregnant!

I try not to let it rule my life though, although its had a massive effect on our sex life as sex equals instant stomach ache which is proving difficult to navigate even with a supportive DH.

But I'll go to my martial arts lessons and I'll go out wherever I want to and very much just "hope for the best, prepare for the worst"

happy I've heard that breaking from gluten then going back after a long period of time may help. I stopped a decade ago but will probably try it again when my dcs leave school. One school of thought is that eating more traditional bread may be better than mass produced stuff. I wonder if menopause has also messed up by stomach in my 40's.

I feel so much for everyone posting here. I dont have IBS but have a motility disorder called 'dumping' (nice!) where shortly (half an hour) after eating, the gut 'dumps' everything in sudden, urgent diarrhea. I seem to mainly get it when eating out, and I haven't yet determined whether that is due to the richness of restaurant food vs home cooking, or the volume eaten, or the 'excitement' of eating out. I can largely control it with a loperamide taken pre-emptively.

But I have been caught out many times - having to race home in the car after a meal out (I'm lucky as I get about 10 mins from the first inkling, to unstoppable diarrhea), or pooed on a countryside walk.

I'm a bit nervous about eating out, and even moreso eating at a friend's house. Travel is also very stressful.

I get this too, it's terrifying

Amitriptyline and probiotics/live food. Lots of kombucha, sauerkraut, kefir etc.

I've just started Symprove and am liking what I see, just a week in

I’d like to give this a go but it’s so expensive! £79 for 4 weeks supply! 😳

I got it for £50, I'll try and find the offer later and post it here

2 imodium every night, regardless of how I've been that day.

Have you been tested for https://gutscharity.org.uk/advice-and-information/conditions/bile-acid-malabsorption/ (BAM)

This made a big difference to DH's symptoms and to those of a friend to whom I mentioned it. I have no idea why anyone with ISB symptoms is not routinely tested for BAM

He still sometimes has flare ups esp in response to stress but otherwise is much more stable. Without the BAM medication, his symptoms seemed entirely all over the place.

Removal of gallbladder. My consultant mentioned BAM . It's not widely advertised that this can be a side effect, you swap one problem for another

Can I ask. those of you who take immodium, how do you then cope for the next few days as I haven't taken it for years as I it would then stuff me up for a day or two or three and then I would for want of a better word have a poonami day where I couldn't leave the bathroom let alone the house.

I can take a full box and it's worn off by the next day now. Your body just adapts to it. If I take 2 every night without fail, it makes my bowel behave. It doesn't block me up for days

I'm so glad @Happyhappyday that this worked for you! I sadly can't go back on gluten at all but am happy to avoid it completely along with dairy and a lot of other stuff - it's been many many years of completely cutting all this stuff out. Plus taking probiotics and all the usual vitamins and supplements.

I'd really encourage a lot of sufferers to completely cut out triggers permanently - it's hard to get used to, but all the horror stories on this thread were things I'd have daily, too. Now I am pretty asymptomatic ans haven't even touched imodium or anything else for years.

Actually what @gamerchick describes is how my old gastroenterologist told me to take Imodium. He said people take it too late and the key is to take it just before bed.

I have horrific IBS-D and have done since I was in my late teens, since having my second child it really really ramped up a notch, and now I have no gallbladder too I can go from 0 to poonami in two minutes. It's utterly debilitating and the only things that seem to work for me are: 3 Imodium at night (I am overweight, 2 does nothing for me), every night, codeine regularly for pain and to slow the bowl, probiotics.

I've had some relief with Biokult and other capsules but the biggest and fastest change I have noticed is Symprove, which is water based, and you drink one capful every morning ten mins before eating.

My symprove referral link is below if anyone wants to try it. It's £150 initial outlay (£130 with my referral) so it probably won't be for most people. I'm only a week in, so can't claim any miraculous results, but I have noticed some benefit already, so hoping it continues.

I have absolutely no affiliation with Symprove whatsoever, and like I said I cannot say it healed me completely or changed my life, I'm too early into the course, but there may be some people here who have been thinking about trying it anyway, so thought they might like £20 off.

symprove.mention-me.com/m/ol/qi3ei-gemma-odonnell

Massively relate to this.

Any diarrhoea is generally quite low volume for me (it’s just that I’ll then be going again every 20 mins). When im having a bad spell I’ll try to wear some Tena pants as they prevent any marking or wetness on my skirt or jeans and will give me enough time to find a loo. While by no means the best option, I can honestly say this has been a life saver several times now!

One strange thing. Pre colonoscopy I had the moviprep . After that my stomach settled down for weeks. Was it the fasting or the clean out??

I've done this before too, my husband acts utterly disgusted by me, which makes me feel so ashamed. Does anybody else have a partner that doesn't understand how disabling this condition can be?

I think that’s really sad and horrible. What if he was to develop some sort of disability? Most people as they get older will struggle with some sort of incontinence type issue, disability or not! Its really short sighted of him and cruel to be so horrid.