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.

@ticktickticktickBOOM can you please share the list? Much appreciated.

I live with it extremely well with virtually no symptoms but it's extremely bad almost straight away if I eat trigger foods. Here's what I do:

• regular exercise, absolutely no dairy, no wheat, rye, corn or oats, no rich food, low alcohol, vitamin and probiotic supplements, no high sugar foods, lots of water,.limited raw food. Meat seems fine (low fat tho). It's all about nailing down what the trigger foods are and then avoiding them permanently like the absolute plague. If I have even one once it's a complete bloody disaster...so I don't. Cutting them all out permanently is surprisingly easier than trying to have 'just a bit'. It is what it is.

I stick to this religiously and haven't had most of these foods for over a decade, but it's worth it because I don't know anyone else who has such an 'easy' experience with IBS in terms of managing symptoms as I do (if you don't count the ridiculous ongoing will power I have to practice every time I see a cake/muffin/pizza/spaghetti/Baguette/milk choc bar/cheese/etc/etc).

Post gallbladder surgery mine became much worse, I have GERD so between the acid and the bile it was miserable. I avoid fatty foods, gluten and lactose now. What has helped is 1omeorazole in the morning. If I'm a guest somewhere with no food choices I take a second omeprazole at bed time. Stomach pain Maalox helps.

I've had cameras down and up, ultrasound, MRI all clear.

Very similar to PPs- medication, awareness of dietary triggers, don’t drink, exercise a lot and like to be very aware of the location of toilets in my life. The medication has made things much better, as has avoiding eating fruit at the end of a meal and only as a snack so I digest it without pain. Another thing I’m really mindful of is wearing tights - I’ve had to whip mine off at work in winter because of construction and pain that’s developed due to bloating after eating.

Other members of my family have much worse symptoms than I do and it really affects their lives - can’t go for hikes/ rural days out, encyclopaedic knowledge of public toilets, rigid diet control, issues at work, spare underwear stashed at work and in handbags etc. So many workplaces only have one/limited toilets and it can be so humiliating if you’re having a flare-up. I am very glad I work in a secondary school, not a primary - many only have one staff toilet and everyone descends on it at the same times of day and there’s no privacy.

So I’ve suffered with IBS-D for 4 years now, 2 colonoscopies later, low FODMAD diet, high strength acidophilus, digestive enzymes, lactase, peppermint capsules etc etc the only thing I can rely on somewhat is lopromide.

I have no specific triggers but have found that if I don’t eat lots of onion, leafy greens peas/sweetcorn or wheat it does help a little, but sadly not much. I now have decaf tea, oat milk and have stopped drinking coke other than on occasion and completely gave up rose wine as it was the only obvious thing that upset my tummy, but it wasn’t something I drank often anyway as I’m not much of a drinker.

I absolutely hate it!! I am very shy about this sort of thing anyway but that never bothered me as it wasn’t a problem. Now it’s definitely a problem and I often don’t go places or do things and I work for myself because I just wouldn’t be employed any other way. Lopromide does help but taking it too often or too much can be just as painful, though admittedly has less embarrassing consequences but definitely more painful and so because of that I try to take it sparingly.

For such a hideous and life controlling issue I can’t believe we don’t have better solutions.

Oh I once read that taking a daily anti histamine can help for some people as it meant to reduce inflammation. I tired this for a long time and I can’t say I noticed any difference, might be worth a try for you though. The other thing I read/tried was to take a daily high strength calcium tablet as calcium has a natural constipating effect but the calcium must not be mixed with magnesium which it often is as magnesium has the opposite effect which is exactly why they are often paired together.

No idea if this will help anyone- I don’t work for them or anything I just found they’ve really helped me, I have a lot less bloating and discomfort since I started to take them, I took 2 a day initially and now take 1 a day as a daily maintenance dose…

Bio-Kult Advanced Multi-Strain Formulation for Digestive System,60 Capsules amzn.eu/d/44Nq5vd

I had three awful bouts last year for the first time, got referred for a colonoscopy which found nothing untoward. This year I'd only had a couple of mild bouts and thought it was maybe gone, until last week when I had a horrible, horrible episode. Apart from the terrible pooing, I'm really anxious about how I would manage the pain if I was out (I've mainly been WFH the last couple of years). It was just so excruciating, and I was sweating like a shower head and couldn't really walk or stand for about 40 minutes. How would one manage that in a café? We're meant to be going away in a fortnight, and I'm now dreading it.

Loperamide.

I have ibs-c so not much help but I sympathise. Try joining a Facebook ibs group. There are so many things that could be triggers for you and its a matter of keep trying till you get there. I didn't find my nhs dietician any help at all. Infact I knew more than she did! Anxiety and stress can also be triggers. Keep a food and symptom diary and you might just nail it that way. I find that there are certain foods I can tolerate a little but if I have too much over 2 days then I suffer. Its not easy as its a very individual condition and what works for one person doesn't necessarily work for someone else.

Yes the pain is awful isn’t it. It’s almost as bad as the pooping itself, which is almost a relief in a way when it comes.

Ive been out in restaurants before and the cramping and pain has started and I’ve had to sit there sweating and smiling through it all just desperate to get home. A bit like that scene in Along Came Polly where he’s eating a curry and suffering the worst ibs imaginable but can’t / won’t tell her. So relatable!

Hi, IBS-D has blighted my life for over 35 years. It affects where I go when I go and the job choices I have had to make.

I have been examined and probed and no explanation has been found.

I live on loperamide (daily - with extra tabs when it's bad) and codeine ( which I try to only take in the build-up to a planned event)

When we travel or go out I plan where toilets are in advance and it almost becomes obsessive that I need to know timings and locations. This must be hell for my long-suffering wife, but she is incredible, especially if I just have to disappear in the middle of a shopping centre for 20 mins to deal with the sudden and uncontrolled gurglings.

You have my sympathy and I hope you find a way to manage.

I mostly manage my IBS with loperamide prescribed by my doctor ( often sold as immodium). I take two capsules every morning with breakfast. I keep a pack of them in my bag when I go out too, along with packets of tissues.

I have to know where toilets are going to be whenever I am out too. If my outings will involve eating I take a further couple of loperamide capsules before the meal and always head to the toilet before leaving the café/restaurant. It's not perfect, and I can and do have some close calls, which do make me very anxious.

Lockdowns and the days and weeks immediately following them were a nightmare because far too many places seemed to think that Covid meant people no longer needed toilets when out and about and closed them!😠

Have you asked your doctor to run some blood tests to check for anything that might be contributing to it? Conditions like an overactive thyroid can be a big cause. My IBS did improve a fair bit (though not entirely, I do still get some flare-ups) when my own overactive thyroid was diagnosed and treated.

You have my sympathy. It is horrible and it does knock your confidence in going out.

Just following thread as I have severe ibs really struggling to keep control of it. It's so draining having to think far ahead for a day out. Will be interesting to see how others manage it

I've had a flare the last few days.
Drains me, no energy at all and needing 5-6 loo trips at.very short notice.
Dr gave me merberverine, which I've spelt.all.kinds of wrong.

It makes life hell when it kicks off. I don't like leaving the house tbh. Rushing to the loo in Tesco and leaving the smell behind is kind of embarrassing.

I'm still up now at gone midnight as I can feel the gurgle, I'll be exhausted and sleep mostly.tomorrow.

So yeah, how others cope, I don't know, I just try and get through it,.drink lots of water, take the meds, don't stray.too far from my toilet.

It's both validating yet sad that all this sounds so familiar...for years I felt guilty that my DH must get so frustrated that I hesitate when he suggests going out for the whole day with no real plan on where to go, or my anxiety about caravan and motorhoming holidays (or any holidays at all), or my nervousness about long journeys with no scheduled route or staying over at somebody's house as a guest. Having utterly unpredictable cramps, 100mph poop and occasional waterfall diarrhoea that cannot be contained (happened to me at a WEDDING during the speeches!) on and off for 30 years has leeched all the spontaneity out of me.

It's only recently that I actually started feeling angrily envious at all those people who wake up, have breakfast, poo, and go about their day without a care for where the next toilet might be.

How have other IBS-D sufferers coped with Covid diarrhoea? I've had it twice and it takes bloody ages to get things back on an even keel, horrible. I wonder if non-IBS sufferers go back to normal more quickly?

Also, do any of you find that if you go too long without eating (like 36hrs+), when you do reintroduce food it causes a catastrophic flare straight away? That's what happened at the wedding, I hadn't been eating to avoid problems on the lead up, but felt obliged to eat the lovely food on the day. Sadly it only stayed in my body for about an hour.

I have Crohn's and have learned not to care.

In towns that means I'm totally shameless about going in bars and restaurants and cafes just for the loo. Yes, there are few proper public loos around nowadays but there are other facilities.

If I can I'll buy a drink or whatever after, or make it a place I go to at other times so I feel less bad about not being a customer. But if it's a choice between shitting myself, or using a loo I'm technically not supposed to, or spending my life at home... I know what I'm doing.

Tips if you're embarrassed in public loos: if you put loo roll in first there's no 'plop' noise. Also, do a 'courtesy flush' where the flush disguises any other noises.

I don't make a habit of it but yes I have shit in a field before. Yes it sucks and I hope to never, ever do that again. But again, I would rather live my life and run that tiny risk than not do things that make me happy.

I'm aware I may sound like a lunatic but I honestly think if you can just learn not care it is so much better. I'm never anxious or nervous about it, don't plan ahead, don't not do things. I used to do all of the above but for me the anticipation and worry was worse than needing the loo and since I've let that go it's better.

Im struggled to up load the screenshot so writing the list - long words!
For @FloorWipes and anyone else:

carboxymethylcellulose
carageenan
Maltodextrin
Polysorbate-80
Titanium dioxide (just banned in Europe incidentally)
Soy lecithin
Xanthum gum
Aluminosilicates

This research article points a LOT of evidence at additives wreaking havoc on our digestive systems:
ncbi.nlm.nih.gov./pmc/articles/PMC6567822/

I always carry a little zipped makeup purse in my bag which contains a bottle of VIPOO spray, Buscopan pills, Imodium instants, painkillers and wet wipes. Very useful in emergencies!

Generally though I manage as I’ve identified over time what and when to eat. Appreciate this doesn’t work for everybody though.

My best friend sounded similar to you .

Baby wipes and nappy bags in a handbag at all times . She's had emergency poos in horse boxes , bushes , all sorts but we are equipped .

She thankfully has made progress despite initial medications having no real benefit ;

• hypnotism ( look it up !)
• acupuncture
• cut out all dairy

I don't make a habit of it but yes I have shit in a field before.

I walk a lot.. I have a special poop trowel that's designed for walkers that need to poop.. it's got its own bag and a little stash of toilet roll with it.

I may not have done much with my life, but I can say, I have popped on a hill in England, a hill in Scotland and a hill in Wales.. 🤪

I have ulcerative colitis and it was a horror until I got on the right medication. Even now I have to get up early and eat something to give me time in the morning for a few trips to the toilet.

Mine cleared with probiotics while on a good ( low sugar) diet .

@saltwaterandsuncream have you tried the FODMAP diet? It highlighted to me that onions were a trigger for me. Onions! I had already been gluten free for 6 years at that point then had an almighty flare up that the FODMAP diet helped me get through

@PinkArt the FODMAP diet was incredibly helpful to me too, I was more fortunate in the sense that I identified specific triggers and was able to reintroduce a lot.
Are you on supplements or have you seen a dietitian? I ask as I read that the low fodmap diet can be too restrictive for the long term

Just to say that NHS guidelines are for people to be tested for coeliac disease before being diagnosed with IBS. It is autoimmune and particularly found with other autoimmune disease such as hypothyroidism.