How do people with IBS cope with life

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.

Loperamide.

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.

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

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.

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.

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.

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).

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

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.

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

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'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.

@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 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.

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 . . ..

Oh, and i have a radar key.

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.

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

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.

@Afterfire outdoor your bouts be linked to hormones?

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.

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 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.