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 take (probably too much) codeine as it’s the only thing that controls it.
It seems to be getting worse as I get older and more foods set me off. The slightest bit of stress and I’m straight on the loo.
If I have to travel, my body sort of shuts it down and it’s the only time I go more than a day without ‘going’.
The first thing I google, when going anywhere new, is where public loos are.
I’ve tried giving up sugar, dairy and cutting right back on carbs but it doesn’t seem to make much difference. I’ll be fine with say, tomatoes one day, then the next time I’ll be on the loo with cramps and orange diarhrrea within an hour.

I forgot to mention. In the "in between" stage of getting better but not entirely better, Buscopan helped hugely. It was fantastic for getting rid of the sense of "feeling" my insides that I had when walking around otherwise and that was what made me anxious. The less feeling, the less anxiety, and a positive loop occurred where I felt better about it all.

My younger sister has suffered with this since her early 20s.

It’s always best to have tests to rule out any underlying causes as the symptoms can also be the symptoms of other conditions.

She wears Tena pants if she’s going out for the day and there’s a risk of accident, but thankfully that has only happened the once.

Loperamide (immodium) is my freind for days out or meals out. I have alternating IBS-C then I get excruciating painful cramps that make me nearly pass out when trying to go and then have a bout of IBS-D.

I avoid certain trigger foods like high fat/creamy foods while out.

If I'm out I'll take an immodium at the first cramp or gurgle.

My husband suffers terribly with IBS and until I ment him I never knew how debilitating it was. He doesn't seem to have any obvious triggers although he has found lately that overeating big meals makes it worse other than that it can be triggered by stress/ anxiety etc. i do feel for him as it really impacts his life. My heat goes out to you all but I'm reading your posts with great interest xx

Mine has improved as I’ve got older and definitely when my periods stopped with the menopause. I don’t have particular triggers but if I was going to an event or out for the day, I’d eat plain food beforehand and double my buscopan dose. That seemed to work and the fact I wasn’t worrying helped as well

I try being aware of triggers. I always carry medication with me if it gets bad I take buscopan. I had a bad day today but I ate sausage casserole yesterday. I remember going to the seaside and having fish and chips with my children and then rushing to the toilet with them both in hand felt awful and it's so embrassing in public. I never have a drink if I'm at work the next day as it goes through me.

Your post is so relatable, OP.
I have mine relatively under control by following a low fodmap diet most of the time. I tried reintroducing foods but without much success, so have just accepted it as my new norm, but just follow it 90-95% of the time. I always carry loperamide and if I have plans where a flare up will be bad, I'll take it before the pooing has a chance to start. Stress is a big trigger but unfortunately so is excitement so something like a gig I'm looking forwards to, or a date, is likely to see me on the loo loads if I don't loperamide first.
I also quickly got over any squeamishness about talking about poo. If its a really bad flare up, if needs be I'll let people know if I keep needing to rush away from my desk, or while I'm distracted while I'm with friends as I'm worried about where a loo is.

Mine is really unpredictable but I found buscopan helps. GP recommended it and while it doesn't stop the symptoms it reduces flare ups from days to hours... although currently on day 5 of pretty horrendous pain and bloating so bad I haven't slept more than hour.

I have the added delight of being horribly prone to UTIs and an IBS flare up almost always triggers one and the other way round.

The pain gets so bad I've fainted from it. Ive worked out too much protein or dairy can trigger it, stress and hormonal changes too. But other times it comes out of nowhere. I really hate pooping in public toilets too so if I have an attack when out and about it's so stressful (which adds to the symptoms!). I avoid going anywhere unfamiliar around my period and can't drive if I'm in pain because I'm afraid of fainting again.

I thought I was the only one who suffered from this! I didn’t know it was IBS, I thought it was related to my operation when I had my gallbladder removed some years ago. Since then - I had one accident 😭 and some near misses. I don’t know what triggers it.

It’s like my life revolves around toilets.

I work in a school too, and I don’t eat anything apart from fruit for lunch as I feel like I will have to rush to the toilet in the afternoon. In the morning I have my breakfast at 6.30-7am the latest.

I don’t eat anything on long journeys and would love to just be able to go out without worrying about needing the loo.

I always took soya milk because I thought dairy was the devil. I tolerate a small amount of cows milk in my morning coffee and it's absolute fine. Soya milk has me cramping and makes me absolutely bagged up with wind. Broccoli, cauliflower and leafy greens kill me too. I try avoid onions. And anything with too much grain.

I drink a shit load of strong peppermint tea which always feels lovely and soothing as it helps the cramps and gets most of the wind out. And buscopan if it's night time and I can't drink too much liquid. Oh and yakult helps if I'm having loads of flare ups. I drink 3 a day when it's bad.

I've been a lot better of late after having my coil out.

I could have written your exact post OP. I've always had problems with bloating etc but since being pregnant I've had diarrhea regularly (along with morning sickness!). So for the past few months I've stopped going out as much, can't plan anything in advance and constantly thinking about where the nearest toilet is. I think mine is more anxiety related, if I know a toilet is nearby I feel much better. So will usually choose a familiar cafe or restaurant where I know the toilets! I have an app on my phone now which tells me where public toilets are too. I've not had to use it yet but even just knowing I have the information on my phone helps.

@Afterfire outdoor your bouts be linked to hormones?

If it only happened after your gallbladder surgery it could well be bile salt related rather than true IBS. There is a drug (Questran) that can help with that, as well as dietary manipulation (low fat diet / small frequent meals) so worth having a chat with your GP.

I had colon irrigation every month for a year and it resolved my IBS and not had it since (over 20 years ago).

Loperamide taken before i go anywhere thats a long journey or if i'll be out a long time. Always use the toilet right before i go out. Stay local.

Oh, and i have a radar key.

I have ibs and needed the loo urgently in Waitrose in Wallingford. It took me about 10 minutes to manhandle enough toilet paper out of their awful dispenser to wipe myself. I felt utterly humiliated and then got angry so made a complaint. I told the male manager he needed to go and try to get paper out and imagine how that feels for someone with a disability.

Anyway I've found antibiotics make it 10 times worse to the extent of needing to stay in bed with the horrendous pain. Mebeverine doesn't seem to help, buscopan works better, along with plain yoghurt and probiotics, either yakult or capsules.

I can never eat reheated food, which can make eating out fun! Chocolate isn't good, neither are any type of bean and decaff of everything.

It's horrendous sometimes and I get depressed over it when it's a bad couple of weeks. Stress definitely makes it worse and then I get stressed over the ibs . . ..

I have IBD - Ulcerative Colitis, 6 years now. I saw an article this June which listed some food additives that are known to cause intestinal inflammation. Like others here I had tried reducing and cutting certain food groups (seeds, nuts, wholemeal, dairy, bread/pastry) but none of it worked. So I thought I'd try cutting the 6 or so additives out instead. Well, I have had zero symptoms for 7 weeks now after 18 months without a break fro IBD symtoms.
One on the list was maltodextrin. It's in absolutely eveything!
Google it - it causes bloating and gas and is suspected to be associated with triggering Crohns and other autoimmune disorders.
If anyone wants a snapshot of the list I can post it up.

@bluevioletsky I didn’t know that. About the bile salts. No one ever mentioned that to me before. I will see if I can get hold of a GP and get their advice.

I've had ibs since I was a child, it got really bad from 15-18, calmed for a few years then got bad again, it seems to get worse with age. I have bloating, trapped wind, constipation, urgent diarrhoea, pain. Sometimes I eat something and within 10 minutes I'm on the toilet. I avoid certain social situations and have to plan things around where a toilet will be. I have taken codeine in the past that definitely helps but doctors stopped prescribing it. Lopermide helps, but then I get a few days of painful constipation. I have often wondered if what I have is more than Ibs, but drs have never sent me for further testing.

I have IBS (although nowhere near as bad as some of you on here, and I'm so sorry for you). Bizarrely, going vegan about six months ago has really helped. A friend of mine (not vegan) has tried kinesiology. Went from always having to know where the nearest loo was to being completely fine. Hope that may be a solution for others?

I don't go out very much and if I do I look up all the public toilets, I never eat out, I hate it

Do you mean “could” ….?

I have no idea. I take 22 medications a day for all my health issues - but most of them have come some years after the ibs started. I went through early menopause aged 37 due to all my autoimmune issues and have been on HRT since then so my hormones “should” be reasonably even now but who knows….. Oddly enough it’s (HRT and getting older) has made me rather constipated which is something I never, ever imagined I would ever suffer with. You’d think I’d be grateful but actually it’s made me even more nervous because whereas before - when I had an upset stomach every day first thing - if I went to the toilet I pretty much knew I was going to be okay, I often now go days without going and feel very anxious worried I’m suddenly going to have to go! There’s no pattern to it. And the doctor gives me laxido which I do use sometimes but if I’m not careful it swings me the other way.

Its a horrible thing to suffer with.

I cant imagine ever being in the position of a normal person and not having to think about whether or not I’m going to shit myself each day. Even though it’s never actually happened. It’s been very close and that terror and panic is very real.

I had IBS for a couple of years. It turned out to be caused by a poor microbiome following antibiotics and was totally resolved with probiotics (expensive ones unfortunately!) But when I did suffer with it I really struggled walking home from work sometimes. I knew where all the public toilets were! But I wonder if maybe hiking could be done OP? If you let your friends know? Depends on the terrain (trees/hills/cover is good!) but it's often fine to just go outside. Take trowel, paper, and a bag to carry the paper out. I did this a few times with the IBS. I have done remote wildcamping so going outside doesn't faze me!
Towns and cities are really difficult though, I sympathise.