Does IBS mean no social life?

Hello everyone, This is my first post! :-)

Since 2011 I have been experiencing more frequent and intense symptoms and was given a diagnosis of IBS-D after several medical tests. Since that time, I have noticed a change in me, I am less out going and the thought of socialising/ going out fills me with fear. I also don't like to plan events in advance as I can not be certain how I will feel when the time comes, I'm also not as spontaneous as I once was because the fear of a possible flare up is always looming over me.

I don't want to let IBS define me or ruin what should be the most fun years of my life. I'm only 25!

Has anyone else experienced a changed in their social life since having IBS?

Is there anyone that still enjoys an active social life despite having IBS?

16 Replies

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  • Hello I am dealing with the same problems am scared to plan anything incase i become ill or not feeling up to going out.

    I have been told to plan my events such as is there any toilets near by if you suffer going to the toilet more frequently and to try not to worry about going out which is hard to do .

    I'm only 22 and have to start coming to terms with i have IBS just little changes you have to make you your life style hope this helps .

  • Hey Tilly901, I have received the same advice as you. Subconciously I always make a note of where the toilets are when I am out. I haven't been to events in the park/festivals etc on this basis as I am scared there will be no toilets!

    Thank you for your response and I hope you continue to adjust to the changes you've had to make x

  • Hello Sorry for late reply when i first became ill i was afraid to go out of the house as when i went out i needed the toilet more frequently and did not know if there was any toilets available and i didnt have much social life much gradually i'm getting back to how i was and like you said make a list of where the toilets are :) x

  • Hi,

    Yes, I think everybody with IBS has a problem with spontaneity in a social sense for obvious reasons, you're definitely not alone, but there are a lot of things you can try to make life better.

    For instance, 3 months ago (and thanks to this network) I was pointed in the direction of the FODMAPs diet which works brilliantly for me, giving me about 98% control of my IBS provided I stay on the straight and narrow. Do you know about this and have you been referred to a dietitian?

  • Hi Roz1485, thank you for the advice.

    I will seriously look into the FODMAPS diet, I've heard good reviews. The thought of having to cut things out of my diet that others take for granted (e.g. onions, garlic etc) is upsetting but if it helps, it will surely be worth it!

    I have not been to a dietician as yet, I was supposed to be referred but it did not happen. I will ask the GP again.

  • NOOO!! Don't let your IBS rule you!! Honestly, the best thing I ever did was sit down with my friends and tell them about my tummy troubles and what IBS was. It was like a weight lifted off my chest and now when I have to get up halfway through a movie to poop, they understand and don't judge me. I have toooons of tips it you ever need help :p

  • I have told some of my friends. The people who are around me are aware of my IBS and we are able to make light of the fact that I often need to use the toilet in awkward situations! (e.g. whilst in the doctor's waiting room...even, on a date!) but it's still annoying. I am learning to cope with it better as time goes on I suppose.

    Thank you for your response and any tips would be greatly appreciated x

  • Anyone tried kinesiology? It is an alternative approach but even the NHS are beginning to recognise this as a valid treatment. Google away and find a local practitioner, it will cost nothing to ring them for a chat.

  • Yes!

  • You are so right, and so brave to tell your friends. I didn't have that courage and spent many years worried sick about what was going to happen. The worst time for me was going to Center Parcs (sorry, if you are not from UK, it is chalet style accommodation where you share toilets and bathroom with friends) and I dreaded going to the toilet where everyone could hear!! The main thing for me was the wind, very embarrassing! However, like Roz, I too have had an amazing response from going onto the FODMAPS diet. Worth googling if you haven't come across it before :-)

  • OMG I would DIE if I had to share a bathroom like that! and yes FODMAPS is the best! :p

  • Thank you for your responses everyone! Sorry I took so long to reply!

    I have heard about the FODMAPS diet but my GP has not mentioned it to me, there was talk of referring me to a dietician but nothing materialised so I decided trying to help myself by doing elimination trials. I will ask about a referral again.

    I have not tried Kiniesiology, but I am willing to try anything that can alleviate the symptoms.

    I hope they continue to develop treatments that can help us all. People don't realise how much IBS can interfere with our lives, I have told people I have it, some understand but others don't understand how much of an impact it has.

    On the bright side, at least it is not life threatening! :-)

    I'm so glad I can talk with people who understand and not feel like a whinging drama queen!

  • Hi Chocobella,

    Since you might have quite a wait getting to see a gastroenterologist and/or dietitian, here's some info on low FODMAPs which you could try in the meantime. You initially cut out 5 food groups: fructans, fructose, lactose, oligos and polyols. I also have to cut out rice and oats as these are triggers for me personally. This regime gives me 98% control over my IBS.

    .

    The best information is at: med.monash.edu/cecs/gastro/... which is the site for Monash Uni in Australia where the diet was developed. There’s a lot of info on there, plus if you have an iPhone there’s a really useful app you can download. Patsy Catsos's book 'IBS - Free At Last' (available from Amazon) also gives excellent guidance, food lists, recipes and a plan to follow.

    Hope this is useful,

    Roz

  • Thank you so much Roz. I'm going to go onto the site now :-)

  • Over the years i have worked out a lot of things food wise that trigger it off. But stress is 1 of the biggest causes, but like others have said don't let it ruin your life there is ways round things.

    Try to get hold of a rada key for the disabled toilets, always bring spare underwear, and if it happens to be a very bad day and you still have to go somewhere use a sanatary towel in the back part of your knickers, it gives a lot of conferdance as easy to change.

  • Thank u :-) I will look into getting a rada key. I was not aware of those.

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