Newbie who's losing her mind

Hello All, I'm a newbie here and have joined because I've hit an emotional breaking point with IBS. I've been visiting the doctors for 9-12 months with the diagnosis of IBS - I am currently taking Nortryptoline 10mg at night (amitryptoline made me so sleepy) this also makes me drowsy which I'm struggling with during my working day.

I've decided to give the FodMap diet a go - has anyone else adopted this diet? I can't seem to find triggers - cutting out alcohol and cigarettes makes an immediate difference.

I have stress throughout the day as I don't tend to use work toilets due to the diorrehea and time I spend in there - it's quite embarrassing. I find myself going to the toilet 2-5 times of an evening and it's affecting my quality of life - I'm too scared to eat at work, and I hate being out of the house.

Does anyone have any advice? I'm 24 which I know is a typical age for this to come on, but it's so debilitating I've resorted to crying hysterically some evenings.

17 Replies

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  • Hi there.

    I am new here too but not new to bowel problems unfortunately. I am a lot older than you but I totally understand how it feels to be living like you are in trying to deal with the symptoms. Please know that I have been through all of what you are describing and there are things that can help and you will get through this.

    One thing I found was taking medication earlier in the evening helped me to sleep it off and had less if any drowsiness the next day.

    My consultant advised me to avoid wheat and dairy which she thinks are often main triggers.

    I am back on probiotics which my consultant also advised and used to take biocare acidophilus which I took on an empty stomach when my symptoms were worse but I think they work best tajen with or just after food. I now take one which is less costly but just as good if not better its called quest mega 8 and you can keep it in the fridge or take some with you for when you are eating out or at work. I first got mine in the health shop but now order online as its cheaper.

    At work I know its so difficult if you are feeling stressed at needing toilet breaks frequently or if you take longer in there I've been through it too. Is there anyone you can talk to in confidence? Is there an occupational health dept who can give a lot of support in approaching a manager to explain that you may need some flexibility regarding this you do not have to go into details if you don't want to or if you are not ready to but often colleagues will be very supportive if they know you have a medical condition and it can often improve working relationships which in turn will go a long way to reducing your stress levels. The less stress the better fir ibs as i'm sure you know.

    I'm sure there will be others who will add a lot more than I have but I just wanted to welcome you and say you are not alone, keep posting and let us know how you are.

    Take care...

  • Thank you for your response. It's still very reassuring to me to read all these comments from people who have been in my position.

    I've tried taking the tablets earlier in the evening and this certainly helps with drowsiness the next day. They do knock me out within a few hours though - which isn't always ideal.

    I'm lucky to have an understanding manager, it's just the office isn't too big. So stressing about toilet breaks etc is quite a big problem when you work as one of 20-30 people.

    I certainly need to learn to monitor stress better as I feel this is a big trigger.

    Thanks for taking the time to reply :)

  • Hey!! I'm new on here too and by the sounds of it joined for the same reason as you, also I'm 25 so we're similar ages.

    If you're anything like me the embarrassment is the worst thing to deal with. When I'm at home I feel like I'm in control and although I need to go to the toilet regularly I feel comfortable as I'm in my own home.

    I've only told very few people such as my parents and partner as I worry people will always think it's disguising.

    I'm looking at FodMap at the moment but to be honest there's not any no foods that I eat, I've given up bread recently but so far can't tell a difference. I think the next step is giving up WINE!! But I'm hoping that will be a last resort haha.

    You're not on your own, I hope you find your way soon x

  • Hello! You may be surprised at what foods include FODMAPS. Things like onion and garlic powder are in many sauces, meats, dressing, etc. Wheat, gluten and dairy are in a surprising number of places as well. Hopefully it's not the wine.

  • Hello, thank you so much for your response. It's reassuring to know people of the same age are experiencing a similar thing.

    I'm exactly the same when it comes to feeling comfortable at home. This is a big stresser for me as I'm becoming hyper aware when I'm not at home.

    Alcohol is one of my greatest loves, second to food - so giving up this/ adjusting is really hard. Wine is a killer for me which breaks my heart. But not worth the pain.

    I've given up gluten and wheat very recently and am trialling dairy.

    I hope you find a solution and can still enjoy a glass of wine :) thanks! X

  • Ok, so I’m now 72 and have had both colitis and IBS for 50+ years. Whilst pregnant with my first child I was really poorly due to dehydration, weight loss etc. and a Consultant prescribed codeine phosphate when I was 8 months. Whilst codeine phase is a painkiller it has the side effect of (in the Consultant’s words) the effect of ‘paralysing’ the nerve ends and hence preventing bowel movements. Now I have no idea if his explanation was strictly true but I do know that during the past 50 years I have held down full time work, had two children, owned and run a Residential Home and travelled fairly extensively. Most days I had diarrhoea and would have visited the loo up to 15 times a day if not for codeine phos. Whilst in my own home I would only take it if the constant D was making me feel poorly and that was quite often but I would plan my trips be it to work or travelling by plane etc. like a military manoeuvre. Using trial and error (and checking overdose levels!) I took codeine phase every four hours until arriving at my destination and the security of having toilets to hand. I have never managed to find which foods trigger the diarrhoea as sometimes I seem to be able to tolerate them but not others. I don’t drink alcohol as that certainly added to my woes as does large meals. It isn’t the perfect answer and I’m well aware that others are able to dash off on the spur of the moment but I’ve led a very varied and interesting life. I once came across a website forum where an american gentleman posted his comments about having IBS (D) and had managed to work as a civil airline pilot for 29 years by using codeine phos. He self prescribed and kept it secret as it is an opiate and would have been a banned substance for his job but he also found it to be a life saver. I am sorry this is long winded and no doubt if you ask your doctor/GP/Consultant about codeine phos they will pooh pooh it saying there are better things on the market, well I never found anything that worked for me that left me confident enough to go 4 hours without worrying about the need for urgent toilet facilities. Life isn’t perfect but without my life saver I would have been housebound for much of the past 50 years. Good luck.

  • Hi

    I use neurofen plus and immodium. I often need painkiller for various pains...the latest for whiplash. I self medicate as gp isnt interested really.

    It is constipating but better than urgency.

    I am also 72.

  • Hello and welcome. I was probably around your age when I first started to see doctors over this issue - I'm 35 now.

    FODMAPS has been a lifesaver for many people, myself included. But it doesn't work for everyone. Get a food and symptom diary ap for your phone, and start recording everything - even before you start the diet. The digestive system is complex. You may find foods that bug you 100% of the time, no matter how much you eat. You may have foods that bother you one day, and not the next. This is normal and frustrating. It may be because of stress, other foods you've eaten- lots of things. So just know that's it's going to take awhile to learn. The diet is also quite boring, but it's temporary. It helps to have supervision of a doctor or dietician that knows about FODMAPS to ensure you're getting the right nutrients.

    You may have food triggers that are non-FODMAPS as well, but the diet is a great place to start. As you find triggers it gets easier and easier once you've eliminated them from your diet.

    Stress is a big trigger. Do what you can to reduce it. Try and exercise if you can.

    As for the washroom at work - you are entitled to use it. What kind of place do you work? I'm in an office tower, I know some people go to different floors to poop. I don't have the luxury of waiting when I need to go. Most people won't say anything. I had one insensitive person comment that the washroom was stinky because she thought that I didn't do it. If I had my wits about me, I would have told her everyone sh#ts. I've been open about my IBS to my family, friends and colleagues, and the nice thing is you get lots of questions. You wouldn't believe the number of people that tell me that they think they have it as well but are too afraid to tell their doctor.

    Feel free to ask any questions. I hope you find your triggers soon, and start to feel better.

  • Hello, thank you for your response. It's good to know that people have found some relief over years of having this.

    Diet I think is the most important factor for me right now, up until recent horrific flare ups I've been very in denial still trying to eat and drink how I always have - which has led to some really painful moments.

    I love food and drinks so adjusting is taking a lot of discipline that I've never had to have - I do workout regularly and I'm finding that it makes me feel better in myself, sometimes after an intense workout it'll make me need the toilet - is this something you've ever experienced?

    I've started keeping a diary of food and behaviour over the day to try and stay on top of everything.

    Thank you again :)

  • Definitely exercise can bring on the need to use the toilet. If I suspect problems I'll adjust my running route accordingly to run closer to home or near a public loo. It's common in non-IBS people as well.

    I understand completely on loving food. I was in tears at one point on the restrictions from the FODMAPS diet. But once you learn what to eat and what not to eat it makes things much easier. I still enjoy lots of good food, I know when I go out to eat what I'm more likely to tolerate (doesn't always go to plan). You get very good at cooking and/or baking. And you can still eat the stuff that's crappy for you - just you know what the price is. For example, I love the summer stone fruits, but they are an instant powerful laxative for me. So when they are at their ripest, I'll enjoy them at home when I don't need to go out. But I won't eat them at a friend's place, at work, at a restaurant.

  • Hi there,

    Firstly I would ask advice about swopping your antidepressants and taking over-the-counter plant-based tablets instead. I live in France, but I found some containing hawthorn and valerian helped me a lot - without any side effects.

    I think you realize you can't continue your workday as it is currently. You are going against nature and turning your back on your body. And this could well make your symptoms worse. You need to be using the toilet at work at least once or twice. And you need to be having a proper lunch. I know we are all brought up to brush aside health matters and perform. But your body is telling you that something is up - and it needs your support. This is something that would have sounded crazy to me at 24. But I have beaten my IBS since by understanding that my IBS was just my body trying to protect me from what it considered as threats.

    It sounds like you have identified stress as major trigger. Why not try working on this. I have found these simple techniques invaluable: sickofibs.com/ibs-triggers/...

    Another thing to check out is hormone balance. This can cause depression and erratic mood swings. It is something I took a long time to find out about and worth knowing: sickofibs.com/ibs-symptoms/... Taking the pill can also mess up hormone balance too.

    Hope something here helps you,

    Alison:)

  • I forgot to add that for some people, calcium carbonate (without magnesium) helps with IBS-D.

  • Hahaha yes I found out about that one the hard way. The magnesium set me straight off to the loo.

  • Sorry to hear you are struggling. Sounds like you have developed stress/anxiety linked to your IBS - I am having counselling for this too. It's about breaking the cycle. I follow FODMAP but still get the odd flare up which I think can be down to stress/anxiety. Keeping a food diary can help. Have you cut out wheat and dairy? Drinks can be problematic fizzy, fruit juice etc. Good luck x

  • Ps I take mebeverine before each main meal which helps x

  • If you are starting out on FODMAPs I would highly recommend seeing a good dietitian for support. This is particularly useful in order to guide reintroduction and identify triggers. There is more info in this blog: fodify.co.uk/single-post/20...

  • No beer or fags. I have lager shandy with restaurant meal. Use lactose free milk and marg they've got it in tescos. 50/50 bread thin. Also drink Robinson's lemonade the posh stuff it well worth it. Anything water based is OK lollipops etc. Meats are OK but not processed. Watch anything hard as it will play up your gut. White fish but no batter.

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