Does anyone have any tips for coping with IBS when socialising/going out for the day?

[Summer_13]

I have had IBS since I was 16, and am finding it a constant struggle to cope with going out, even just for the most simple tasks, such as food shopping or lunch with friends. I take medication before I leave, (loperamide and mebeverine) but I still feel like I have no control, I reply on having a toilet nearby and people either think I am acting strange when I excuse myself for the toilet all the time or I get asked why I can't do certain things, such as drink a lot or eat certain foods. Any tips would be greatly appreciated.

[Hidden]

Firstly, don't worry about what other people think, it just doesn't matter.

Have you been referred to a dietitian or had any tests? Have you tried any food elimination regimes and/or kept a food diary? Do you know about the low FODMAP diet which is a management solution for many of us on here?

Pagan

[Summer_13]

Hey Pagan,

Yes I have been referred to a dietitian, and was with them for around a year, no matter how much I changed my diet nothing changed, so the doctors put me on medication, I have tried food diaries and food elimination regimes but nothing seems to help, I stay away from very fatty foods such as pizza as these foods seem to make it worse. I have had IBS for 5 years now and have only just found this site, so its a relief to speak to people who have the same issues as me. I haven't looked at the FODMAP diet but I will do now, thanks for your response.

[Hidden in reply to Summer_13]

Hi again Summer_13,

I'm sending you a rather lengthy post about the FODMAP diet as there's such a lot of outdated and just plain wrong info out there on the web and if you want to try it, it's best to get it right. Hope it helps.

The diet was (and is still being) developed at Monash University in Australia, so its website is the best place to start at monash.edu.au – just put FODMAP into the search box on its homepage and you'll get there. If you have an iPhone there’s an app you can download from there, which will also be available for android in September, and a booklet you can send for.

An American dietitian called Patsy Catsos has written an excellent book about FODMAPs called 'IBS - Free At Last' (available from Amazon) which follows the Australian model very closely and contains all the info you need to get going. She also has advice on which food additives to avoid which is really useful.

I didn't find the NHS guidelines for the diet either as strict or as good as Monash's so stuck with what Monash said along with Patsy's book which became my bible.

When you first read about FODMAPs, you'll wonder what on earth you're actually left with to eat, but you do get used to it. The diet isn't meant to be a life sentence; what it does is to cut out all the food groups which contain the most likely suspects, making it easier to work out what suits you and what doesn't. I found that there were several 'safe' FODMAP foods which weren't safe for me at all, but these were easily identifiable as my menu was so small.

Once you get a real improvement in your symptoms, you then start to reintroduce the different food groups back into your diet one at a time to see which affects you and in which way. After 8 months, I can now eat from all the food groups with very few problems and have identified all my triggers.

I was amazed when I got a result from FODMAPs within 4 days although it can take several weeks for other people, so don't give up if you don't have an immediate result.

Best wishes,

Pagan

[Summer_13 in reply to Hidden]

Thanks Pagan, you've been a great help , I will try FODMAPs and see if I get any results, anythings better than how my IBS is now and I'm just glad to have found out there are other methods of coping , thanks again

[MarkBrennan]

Hi Summer, it doesn't always help, but for an emergency 'quick fix', I have found that a Loperamide the night before and 2 co-codamol first thing on the day + Buscopan throughout can help (I used this on exam days etc). The knock-on for me is a seized up system the day after with trapped wind etc. I did this when I attempted to do a degree a few years ago, but had to give up mid way through as it became impossible - My symptoms rarely include 'D' so possibly a bit more manageable for me than others (although it has still ruined my life)

[Summer_13 in reply to MarkBrennan]

Hi Mark,

I've found that I normally take loperamide early in the morning before I go out, however it can sometimes make me feel slightly ill. I've tried buscopan but it had no impact atall so I rely on taking mebeverine 20 mins before I eat, however I hardly eat much due to the fear of having to go toilet. As for the degree , I can relate, I am about to go into my last year of a degree in photography, and have nearly quit so many times, I live at home and decided to go Uni near where I live as I couldn't consider moving away into halls due to my IBS. It's held me back in so many ways, and I hope one day it improves, thanks for your advice.

[vickilynne in reply to Summer_13]

Try taking your loperamide at teatime, the day before you are going out or try taking one every teatime. I found this to be far more effective than taking it on the day.

Do keep going back to your GP as there are tests to be done you probably haven’t had yet. If you make a nuisance of yourself he’ll hopefully refer you to a gastroenterologist who’ll test for other things such as BAM but may also give you different medication. Amitryptiline works well for some people too.

Try daily relaxation type meditation as well. It’s a vicious circle of anxiety/diarrhoea that feeds on itself and makes it worse.

The Gut Check by Verywell has good online support also with dietary ideas etc. Hang in there, you’re not alone!

[daisie2013]

Hi Summer, I totally empathise with you, I'm exactly the same it is a nightmare. I find that codeine phosphate, available on prescription works best + loperamide on a bad day. I cut out wheat & rye from my diet years ago & I'm just trying the Fodmap diet now which seems to be helping. As far as feeling embarrassed about having to explain yourself just be matter of fact, I find true friends & family understand & are sympathetic especially when you explain that yes you would love to be able to eat & drink anything without suffering the consequences, any other reactions I put down to ignorance. I wish you well.

[Summer_13 in reply to daisie2013]

Hi daisie,

I will try the codeine phosphate, as I've never heard of that before so it may be of help. As for my friends some are ignorant, as they are in that Uni stage where they're out partying and drinking every few days and I can't keep up with that type of lifestyle as it makes me ill, but I've come to accept that now and I'm glad I've matured faster, I have my true friends who understand so that's all that matters, thanks for the advice

[Drummermum]

Hi there

I can empathise completely. I have had IBSd for 18 years now and have tried everything and nothing works. It has affected my social life, travel and work. My life revolves around finding the nearest loo!

The best way to deal with it is to accept that at times you can cope really well and at others not. There may be times when it really gets you down and it seems to rule your life. Allow yourself to accept this and make it easier for yourself. I have a friend who has debilitating migraines and she lets her friends and family that she is having a 'dip' and isn't feeling great. We know as friends that social occasions maybe cancelled which relieves pressure on her feeling guilty. It works with my IBS too!

When I am able to manage it I enjoy that moment and try to remember it as a day I coped well.

I am due to go on holiday soon and it will involve a long car journey and the thought is already starting to bother me. However I know sometimes the thought of the journey is worse than the actual one. I will get anxious and stressed but hopefullyI'll make it without an toilet accident!

[alanh in reply to Drummermum]

have you tried bimuno prebiotic I have and it stopped me going 10 times a day not a miracle cure but it certainly helps me

[Summer_13 in reply to alanh]

Hi,

No I haven't but I will look into it, thanks for the help

[MarkBrennan in reply to alanh]

They didn't work for me but that's great if they helped. I know if you buy them direct from their website, you get 3 packs for the price of 2 with free delivery.

[Drummermum in reply to alanh]

I'll certainly give it a try, thanks.

[Summer_13 in reply to Drummermum]

Hey ,

Thanks for the advice, I can't believe how similar our thoughts are, I can't stand going on long journeys either, and I absolutely love travelling but IBS holds me back and I always ensure toilets are nearby! I've learnt to praise myself when I've had a good day, and accept when I'm feeling too ill to do anything. I try not to let it get me down which is hard but I'm getting more confident in myself and I gradually feel I'm coping better with the condition, thanks again

[MarkBrennan in reply to Summer_13]

Hi Summer, some of the best advice I got was to just go with it. One of my friends is a nurse and she has the opposite attitude - she is convinced that if I eat properly, it will go away! - I wish!! . If I accept it, I am fairly happy pottering around, running the house, reading, listening to music etc. I find I am worse when I am trying to 'man up' and go out and have a normal life. Of course we would all like a normal life, but to some degree, we have to accept it and adapt.

[Drummermum in reply to Summer_13]

It sounds as though you have the right attitude to your IBS! I always try to stay positive but at times it really does get me down, but, if I can I give in to it and accept that many others are going through the same. I do think this site really helps as you can share and talk.

[kath_80]

I was given lots of co codomol and things to bung me up, when they did an x ray, they could of ruptured my colon, as the x ray showed I was impacted and the loose stools was going around the impaction. Make sure with an x ray you are not impacted like me, as the looseness could be like me. It's awful, i know I go to an incontinence clinic and one day i cried in front of the nurse as I have to wear big pads and feel old before my time. The nurse said so many young people have a problem, but don't speak about it. Just make sure you are not constipated as the loose stools, could be why you are like it. Good luck xx

[MarkBrennan in reply to kath_80]

Kath,

I hope you don't mind me saying this, but the last cat I adopted had been taken to the vet to be put to sleep. The owner said he had the runs and it was unhygienic. She refused tests and paid them the £50. Luckily the vets phoned the branch of Cats Protection I volunteer with to see if we could help. He had tests, and like you, an impaction was causing it. His bowel was so stretched that he has Megacolon. I was asked to foster him for a couple of weeks, but partly because I have empathy with him, and partly because he is a lovely cat, I kept him. Thankfully a high fibre diet and a laxative I get from America (as well as his thyroid & kidney meds) keep him well. My vet can get Cisapride for me if I need it (banned for humans due to cases of arrhythmia) or worse-case, sub-total colectomy.

i.imgur.com/V7hfMOw.jpg

I don't know if I could have taken him on without my own issues, but we know that not many understand L)

PS - My doctor won't allow me anything stronger than OTC co-codomol with 8mg codeine in. Maybe I should change doctors. Even when I broke my elbow last year he only allowed those taken with ibuprofen - he doesn't like giving out strong painkillers.

I had some 32mg ones left over from an umbilical hernia op and they helped me on bad days but he just won't let me have them.

[MarkBrennan]

I am having one of those days tomorrow.

My symptoms seem to morph. I haven't had the 'classic' symptoms for ages, but for the last 5 days or so, I get up in the morning and within 15 minutes, I get the urgent need to run to the toilet. All day I have felt like my insides are going to drop out - I took 2 co-codomol and an antispasmodic and managed to go shopping. I am dreading tomorrow as I have a pre-arranged lunch. I am tempted to cancel, but one of the people is making a real effort. She is 95 and has been unwell with an arthritis flare-up, and a food-poisoning type bug. She is a real fighter and makes me feel like a lightweight.

I guess all I can do is paly it by ear tomorrow. I just had some ready-brek and a banana tonight to see if it will calm my system (I confess I had a large breakfast in Wetherspoons today - but it is only 100 yards from my house so I can cope with that and run home if I need to)

I will take a Loperamide before bed and another in the morning and keep my fingers (and legs!) crossed tomorrow

[Marysrory2]

I find Loperamide perfect.