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Original poster

How do people with IBS cope with life

209 replies

fedupfrazzled · 06/08/2022 19:52

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.

OP posts:
ThisWasMeTooo · 10/08/2022 14:22

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.

FloorWipes · 10/08/2022 17:09

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.

Tollystar · 10/08/2022 20:02

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?

Fiddlersgreen · 10/08/2022 20:06

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

OutdoorHousePlant · 10/08/2022 20:15

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

Lineala · 10/08/2022 20:23

Laceylouis · 10/08/2022 11:07

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.

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 . . .

stressybessie33 · 10/08/2022 20:56

@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 :-(

Fiddlersgreen · 10/08/2022 22:07

@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

erin4 · 10/08/2022 22:14

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.

PixellatedPixie · 10/08/2022 22:41

I can’t read every page now but have skimmed through and I’m wondering why nobody has mentioned SSRIs? They completely removed my IBS. They were prescribed for anxiety but removed it and the doctor confirmed that it can be an off licence option for people with IBS. That was about ten years ago so I imagine that there would be more research now.

ThisWasMeTooo · 11/08/2022 00:59

Yes these can help - as I say "you might still shit yourself but at least you won't care" ! However it is best to get to the root cause of it. It's definitely a chicken and egg situation.

stressybessie33 · 11/08/2022 04:13

I actually took citalopram for a while because this was getting too much for me. It didn't stop the physical symptoms or my obsessive behaviours around pooping (still had to try to go several times before leaving the house and still occasionally took the odd preemptive immodium) but it did calm my nerves somewhat. I felt stronger and less panicky. As pp said I kind of adopted more of a fuck it attitude and didn't care as much which therefore reduced the panic.

I stopped taking them when I fell pregnant and am wondering if I ought to go back on them. It seems crazy when I don't particularly suffer with anxiety - only around this one issue - but on the other hand it does control my life to some degree. I have a 4 month old baby and don't want to stop having to go out and about with her.

On a side note having a baby is good in one way as I can always say 'oops baby needs changing' as an excuse to get to the loo and I always have wipes on me! But sometimes getting to a loo while out and about can take longer with a buggy (getting in lifts etc).

Lineala · 11/08/2022 09:16

Fiddlersgreen · 10/08/2022 22:07

@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

No, I'm giving it a go on my own out of sheer desperation!

Softplayhooray · 11/08/2022 09:46

MimosasInFrance · 09/08/2022 22:32

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!

This. PLEASE consider this. It changed my life too although I have to do it permanently and no reintroductions worked. If you stick with the restrictive diet a while it starts to feel normal and you can eat a lot more nicely than you think, and honestly I can home make so much stuff with buckwheat flour or rice flour if I want bread or pancakes or muffins (although I have to make them all extremely low sugar and ok it's not quite as tasty but it's nice enough). I don't need any medication, I take probiotics, I have no symptoms whatsoever. If I go back for even 1 day of eating anything on the banned list I get every symptom described on this thread. It's amazing.

wellineverdidit · 11/08/2022 19:14

Imodium questions:

If I take before bed will it stop the urgent need to empty bowels as soon as my eyes open?

Does taking it increase bloating/wind - as the waste is erm festering?

knittingaddict · 11/08/2022 20:23

wellineverdidit · 11/08/2022 19:14

Imodium questions:

If I take before bed will it stop the urgent need to empty bowels as soon as my eyes open?

Does taking it increase bloating/wind - as the waste is erm festering?

It reduces bloating and wind when I use it. Usually all problems related to IBS are gone within 15 to 30 minutes. Sometimes I have to take another tablet if it's particularly bad. This may not work for everyone though.

I never take it as a preventative and I don't think taking it at night and expecting it to work hours later is feasible. I only take it when I start to feel the cramps and bloating that means I'm going to have issues very soon.

knittingaddict · 11/08/2022 20:26

Having said that I wouldn't take it as a preventative, I would take a dose if I was flying or on a long train journey. The thought of not having a loo handy fills me with horror.

Afternoon and evening are the most risky times for me. I almost never have issues in the morning.

unicormb · 11/08/2022 20:32

Au contraire @knittingaddict my very well respected gastroenterologist told me that the night before is exactly when to take it to beat the morning rush

Lovemydaxie · 11/08/2022 20:51

I take it at night. It slows everything down for me. Once the cramps start its too late. I find taking one immodium at night generally keeps me on an even keel unless I'm in a bad flare. Something else I find really helpful is Enterosgel. Really helps with wind and bloating as well as the diarrhoea. The biggest drawback though is the price which is a shame and it's not available on prescription.

wellineverdidit · 11/08/2022 21:59

Thanks. I've bought both. Will try the entersogel intensive treatment too.
Thanks for your replies.

Lineala · 15/08/2022 12:29

Just to report back, after 5 days on the fodmap diet I feel amazing! After 2 days it was if I had never had ibs. Going to keep going on the basic fodmap for a week and then start re-introducing a food one at a time, but I may stay off wheat for good.

justasking111 · 15/08/2022 12:41

That's wonderful news. My DS got me on lactose free milk and gluten free pasta because of his own problems which were exhaustively investigated privately. We're both so much better.

Keep us updated

unicormb · 15/08/2022 16:04

I've just finished my first two weeks on Symprove and am a bit astonished at the effect it's had in such a short time. I have been keeping a diary of pain, urgency and stool consistency (I know, gross, but important) and I have had just one episode of urgency, minimal pain and absolutely no loose stools whatsoever. I had to go back and check it again because I couldn't believe it. I haven't been a couple of days without a loose stool in twenty years.

I took my DD to the beach the other day and even though I had my radar key, I didn't think about going once, and was able to go right into the sea with her for a splash and a play. I am usually sat on the beach willing myself not to have an episode.

If it's a placebo, it's a bloody good one! I have two more weeks left of this order and I will definitely be subscribing. It's given me some of my life back already.

Neroliandorchid · 15/08/2022 17:40

Oh god I’d been so good lately but today I had to do a presentation in work. The area of the building I do it in has toilets so I always have a bit of a nervous poo first.

I went to go and to my horror they were closed for refurbishment. I had 8 minutes to get to the other side of the site so I dashed across and went to the loo. Great, I thought made it.

Nope, as soon as i got to the presentation room the familiar feeling came and this time I had no time to go. I stood there presenting trying my best and failing to hold it in - anyone with IBS will know that it’s impossible, it’s such a horrible soft consistency (sorry) that you can’t hold it all.

Thankfully due to previous accidents I now wear period pants and I had a pair of chub rub tights over the top.

After 30 minutes I was able to go to the loo but what a mess. It was all contained but the clean up was awful and I had to wrap the period pants in paper and put them in the sanitary bin.

Does anyone know if this will be seen by the people collecting the bin and they will complain? I’m absolutely scared that a memo will go around the business asking people not to do it. There’s many women there but I’m sure I’d still be mortified 🥺

What on earth can I do to stop this? It probably anxiety - I hadn’t got a single twinge to go to the loo before I set foot in that room 😩

blitzen · 15/08/2022 19:47

Thanks very much for this thread, OP. IBS is so debilitating and I envy anyone who doesn't worry about finding toilets, ruining holidays etc. I've just ordered the trial pack of the enterosgel after hearing positive things about it here. Fingers crossed. My IBS is definitely tied to anxiety but hormones as well, possibly progesterone? I rarely had a flare up while pregnant. I always recommend Kefir on the usual IBS threads as I do think it helps and maybe worth a try for people on here. Xx