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 got so desperate I went strictly gluten free for maybe 6 years. I no longer I have IBS. I haven’t had an episode since a few months into going GF and I could always trace back to eating something by mistake. As I got better about being careful, I stopped having episodes. I had severe pain + diarrhea. No particular reason to suspect gluten other than DH nagging me to try giving it up.

I was celiac level strict though, we binned all our wooden utensils, had no gluten in the house etc. I never had something containing gluten as a treat etc. it was easy to stick to it because it seemed to be working and I never wanted to feel like that again! I’ve been eating gluten normally though for about 3 years now.

Don’t let it rule your life OP.
like a PP said - try not to care. I know it’s hard though.
things that have helped me (though not cured me!)
Reducing stress
probiotics - like another PP recommended - the biokult ones are great. Two a day to start with
Imodium for when out and about.
I cut out lactose and onions too.
cutting down on alcohol helped (need to cut it out completely but that is hard!)
also I know I need to cut down on gluten - again difficult for me as I love carbs !

I'm like this and always allow time for breakfast and the digestive processes. It's only a problem when I have to get up early like going on holiday (like today) but we'll stop at a services for coffee and I might be able to go then. My trigger is mainly wheat bran and soya and my symptoms are pain and bloating mot diarrhoea. Buscopan helps but paracetamol is OK.

@ButterfliesnWaterfalls
If yours started after your gall bladder operation it could be bile acid malabsorption [ BAM ]. I had my gall bladder removed around 15 years ago and then had what I thought was IBS for years. Four years ago I was finally diagnosed with BAM after a sechat scan. Now on medication for life, but most of the symptoms have now gone.

i know my triggers but when you need to go you need to go and I will use disabled or men's toilets if needed. I know the signs. I'm not embarrassed...it's a medical condition and nothing I can do about it. I have if a queue in a toilet explained quickly and I found people vvv understanding and will let me run ahead if needed..bread major trigger for me, milk and being on holiday a certain type of water with high calcium set me off badly!

Also Mexican food set me off badly...the green stuff so avoid that. Tbh I can go weeks no problem..the water on holiday reminded me I've stick got it ..

Sometimes surprising foods can be triggers such as apple. It's worth finding out what the triggers are

My IBS is almost constant, with flare ups merging into each other, and it does rule my life, When we had work done on our bathroom, I moved into the local Premier Inn for a week. The builder said "If you need the loo, just ask" I don't think he'd have got much work done! Last year I had to get excused from Jury duty, something I'd always wanted to do, because I'd never have managed.
If I'm going out somewhere I don't eat, because eating means four or five trips to the loo in the next few hours.
I'm very open about it, because it's less embarrassing in company if people know you're likely to keep disappearing. And I always carry spare underwear and baby wipes and nappy sacks.

I had my first horrific episode back in February. Unfortunately I was away from work staying in a hotel. I have never been so ill in my life and it came completely out of the blue.

When I finally got home I tested +ive for COVID.

Since then I have had 4 more episodes ( not as bad thankfully) and eventually spoke to my GP who tested me for everything under the son and finally diagnosed IBS.

I am now ruled by my bowels to a certain extent and would try to always have a loo near at hand .

Thanks very much! @ticktickticktickBOOM

Imodium. The cheaper versions of the same drug work just as well. It's a life saver for me.

However I never go on long walks these days as the risk of an episode is too great and medication takes 15 to 30 minutes to kick in. I aways know where the loos are whenever I go anywhere too. There's no doubt IBS involves some changes to how you live your life.

Try it @FloorWipes

All my symptoms were gone in 3 days and I seem to be able to eat whatever I like now as long as those additives are excluded. I'm on week 7 - I honestly can say this knowledge has changed my life. I have an appointment with my gastro consultant at the end of August and I can't wait to tell him.

Maltodextrin appears to be the worst for me.
It was even in my soya milk which I use for tea (I eat all other dairy) and I drink 10 cups a day so back to milk for me and so far so good.
I've had to cut supermarket bread though and get a loaf from the bakery which is the more pricey aspect but making my own wraps and cakes. I'm becoming an expert at find food I can eat that don't have any of the additives in - like Aldi shortbread fingers - so I don't have to be a martyr!

I have ulcerative colitis.
I go for an infusion of infliximab every two months, take mesalazine every day and am prescribed steroids when I have a bad flare up.
I have to avoid all fried foods, nuts and seeds, green vegetables, onions, tomatoes ( oh,how I miss them 😒) brown/ wholemeal bread, full fat milk, and coffee.
It can be really challenging at times, I have to try to go to the toilet before work and take immodium if I can't go.....
There is an app called Fodmap which is really helpful for keeping track of diet, triggers and even the type of poo that results......

Hi started suffering for years out of the blue early 20’s it stopped for a few years and then restarted. The culprit was the pill. Now tried and tested, anytime I go on it within a month I’m back to having IBS full blown. Originally it took a while hence never realised the connection, until I stopped taking it for several years and noticed a while after my condition had stopped. Started taking it again and it was back. Stopped taking it and the relief was indescribable. Stopped it for good once I realised the pattern, a change of pill brand did not help, and never been bothered by it since. Did food tolerance test at the time, and managed by doing things others have said when I didn’t know what the trigger was. Avoiding certain foods, eating little before going out only helped manage it as best I could, and never resolved the issue. I do wonder if the pill has more of a role when we look at the profile of the condition effecting more women, when they typically may develop the condition. Lot of my friends suffered at similar age. Of course, if your going to stop the pill you’ll need to sort other contraceptive. For us me stopping the pill and using other forms was an improvement, as the frequency of the IBS diarrhoea meant I was never actually able to rely on the pill anyway over many of the years of taking it.

@MilkHunt50 I think you're right about the pill being a major factor.

But I don't think it's the hormones in the pill causing the gastro ptoblems. I strongly believe its all the other shit in the tablets:
Lactose, maize starch, povidone, magnesium stearate (E572), sucrose, macrogol 6000, calcium carbonate (E170), talc, glycol montanate, titanium dioxide (E171), glycerin (E422), ferric oxide pigment yellow (E172).

Unfortunately I fear this is the same for immodium and pentasa - both of which I've taken for years and they work, temporarily. I've avoided additives now for 7 weeks and off all meds now. I'm totally symptomless.

Stopping all vitamin pills was a huge help to me due to all the additives - seriously I reckon they do more harm than good!

I have a really boring diet. That's how I do it. I basically eat the same things at the same time most days. I don't drink milk or eat pulses like lentils. I avoid stress.

Most days are fine. Big meals are a trigger. Holidays are hard as i can't control my diet as much. I hate Xmas !

Dh has had it for as long as I've known him. Medication and watching good makes no difference. We just subconsciously are always near a toilet. Vile disease.

Mebeverine works very well for many people. I guess you could just use it on risky days if you didn’t want to use it all the time.

@SproutsAtChristmas Have you discovered/tried Simethicone (branded version is Wind-eze) I find it super helpful if I have trapped wind.

@MidnightLibrary and @Augend23 thanks both I will take a look!

DH has suffered with IBS for years but has been going through a really difficult patch recently. He cannot eat anything at lunchtime because it seems to trigger a severe attack. It is very disappointing because he had found that eating fermented foods sauerkraut and kefir had been helping. He does have several food and additive intolerances that cause migraines so I am going to show him your list, tickticktickboom. Thank you for that.

Could you share the details of this? I do relate to every post on this thread. I’m at the point where I will literally spend whatever it takes.

I really hope it does the trick @Dahliasrule, it has certainly sorted me out.

I'm also on the kefir etc - building up the probiotics is definitely a way out of this. It also tallies with the evidence that the additives disrupt the gut biome by suppressing the good and feeding the bad bacteria. The priobiotic help to a certain extent but just such a vicious circle if we're then eating additives which messes it up again. I really hope this is the answer permanently!! It certainly seems to make the most sense.