IBS is so unfair!!

I know that sounds extremely childish but that's the way I feel at the moment. I know you guys can't wave a magic wand but I just want to share my feeling and,basically,have a good whinge!

I'm so tired of having to cope with IBS,I really felt better last week and I had something like normal bowel movements,wow..Yesterday me and my Hubbie went into the town centre for a couple of hours, had a cuppa, bought a few things, came home and had lunch(fishcakes, mashed spuds, followed by a yoghurt)

All in all,a pleasant, happy morning, though it was very cold. Then in the afternoon that old familiar gurgly feeling started again, I tried to ignore it, had a quiet afternoon reading and doing a crossword in the local paper, had a cup of tea and gluten-free lemon shortbread biscuit, later on, between 7.30 and 8,00 had my usual supper of cornflakes,toast,tea and biscuit then had to make it to the loo pretty quickly...Not exactly diarrhoea but a very swift, loose stool. Here we go again, I thought.

Felt exhausted today, had a small b.m.this morning, lot of mucus,appalling low stomach pains after lunch(small amount of roast chicken, spuds, 2 tiny carrots and a small helping of my Hubbie's famed apple crumble)Slept most of the afternoon and I feel so depressed at the thought of spending the rest of my life like this.

We usually go to Church on Sunday evenings, it was my turn to do the readings, had to ask someone else yet again again. I just hate not being able to keep my promises and honour my commitments, and do the few things I like doing. I'm trying to stay positive but feel so low tonight.

One thing I have noticed that if I go out in the very cold weather it seems to have a knock-on effect on my gut:so do I just stay at home in the cold weather?!

Sorry to drone on! I'm due to see a Dietician but not until February, because of a change of personnel at the Hospital. I started on the FODMAP diet a couple of months ago but had problems because so much gluten-free stuff has egg whites in it, which I have an intolerance to. So it's back to the drawing board...

Anyway, thanks for listening

15 Replies

  • Hi cathode,your right about IBS being unfair. I suffer with every day all day,obviously some days are far worse than others,problem is you never no how bad a day is going to be until it's here. So like you I make plans then break them,I think the reason we do this is because we are trying to think positive. My husband is pretty good though and now used to being let down.But I have 3boys and I don't think they really understand. I've been through the NHS system also private,I've tried the Fodmap diet but not only does that not leave you with not much to eat,it didn't work for me,so I couldn't really find my triggers. I've now got an appointment with a Gastrologist/hypnotherapist that I'm putting all my hopes on. But I have multiple health problems two life threatening,but not that are as debilitating as IBS. If you tell anyone (including GP) you can't join in with fun or your not feeling well enough because of IBS they seem to look at you as though your mad. There's only another chronic IBS sufferer that will ever understand. I'm sorry to have gone on a bit about this PROBLEM but I feel passionate about it as I think it's just fobbed off and there's so many people suffering with it. If you ever find a cure post it on this forum in block capitals.lol. Rant over. Try and smile for Christmas, and a healthy New Year.

  • Try Probio7 from Holland and Barrett, absolutely fabulous will stop most of what you are experiencing, trust me, please try it. 100 capsules in pack for around £20 but worth every single penny.

  • Sorry your IBS is getting you so down lately. It's awful there is no doubt about it.

    I just had some thoughts about your diet, as FODMAPS worked great for me.

    For the gluten free baking - make your own. They often add other bad FODMAPS food to compensate for the lack of wheat, etc. Gluten free baking often puts me on the loo.

    Avoid prepackaged stuff if you can. At least for the elimination part of the diet. There are just so many additives in things.

    Have you tried eliminating corn (in all its forms) as well? I'd recommend giving it a go as you do FODMAPS. It's a tough one as you might need to buy new starches for cooking, syrups etc.

    Also - I know coffee is a diuretic. Could your coffee/tea intake be impacting your gut?

    Good luck. I hope you can find some relief.

  • You're right. Nobody else can really understand what it's like to have such severe IBS unless they have been through it themselves. All we can do is to listen and try and make sense of it all.

    From what you write, you have a very sensitive gut. The things that affect you, food, stress, going out, the weather, commitments, all tend to go to your gut. And of course whenever your guts are upset, it makes you so depressed. It is indeed a vicious cycle and the challenge is to find some way of breaking it, either by adjusting you life to avoid or deal with the things that upset your gut or by restricting your diet or by finding something that calms your gut down, like, for example low dose amitriptyline (10mg at night).

    One comment about your diet. A low FODMAPs diet is not a gluten free diet. And low FODMAPs means that you need only regulate or restrict the fermentable carbohydrates in your diet, like onions, plums, prunes, apples, milk if you are lactase deficient. You can eat modest amounts of bread - two of three slices a day. Have a look at The IBS Network's IBS Self Care Plan on Stress reduction and Food intolerance.

    I do hope you can find your own ways to calm your gut down over the Christmas and you can enjoy the holiday.

    All good wishes

  • Totally agree IBS is so unfair I was dignosed at 18 I'm now 42 and still suffering and im on a gluten free diet and dairy free. A lot of my symptoms have become more manageable over the years but I do get sick of the flare ups and they always come at the wrong time.

    I would also recommend a good probiotic I take acidophilus from Natures Best they do help.

    I also notice someone mentioned Amitriptyline I was taking this for something else a couple of years ago and strangly enough my IBS was less active when I was taking it but at the time I was on it for a different reason so had to stop it.

    I hope you find ways to calm yours down soon x

  • Thank you all very much for your sympathetic and positive response, it's good to know that I'm not alone in this and you all understand that IBS is not restricted to the gut... it's not just having a "bad stomach"..... but affects the whole person, physically and emotionally.

    I've taken on board your suggestions and comments..my gut certainly IS ultra-sensitive at the moment, it's been like this since I had a Colonoscopy, Gastroscopy and Barium follow-through earlier this year because my Calprotectin levels were raised. Nothing has been found so far..next stop a Capsule Endoscopy which is less invasive, at any rate.

    Everything has been such a struggle this year. I'm already taking medication for depression so I doubt if I would be allowed Amitriptyline as well.

    I'm considering a probiotic and looking again at my diet though I'll probably wait until I see the Dietician before making any more decisions.

    IBS has a horrible knack of dominating one's life and it seems to take up a great deal of my Hubbie's time too. My 3 children live in different parts of the country so I don't inflict it on them too much but there have been times when I haven't felt up to making a long train journey to see them and my darling grandchildren.. Fortunately, rather late in the day, we now have a car, which has made travelling easier.

    Anyway, God bless you all for taking the trouble to reply and not letting me wallow in it but providing useful suggestions. I hope you all have a happy, peaceful and flare-up free Christmas

  • Hi, everytime I tap into this website someone else is upset and frustrated by i.b.s. Why do people make such a fuss of food and Christmas especially for fellow sufferers? I think people need to leave us alone,.it's likely the stress has done it rather than the cold! I'm suffering with something that makes my bowel sore so there we go! I've already been told I've spoilt Xmas because I've been ill for the last week and warned not to become ill over Xmas - fabulous I'm now on the verge of cancelling Xmas so everyone else can cope! It's not funny is it?

  • No, it's not funny and I'm sorry that you've had such insensitive remarks levelled at you...I tend to level the remarks at my self which I know I shouldn't, I'm cautioning myself not to be unwell over Christmas instead of just rolling with it, if I came over with a migraine(no offence to any migraine sufferers who are reading this) )I suspect that people would be more understanding. On the other hand, with any chronic complaint,people tend to say.."haven't you got it sorted out yet?" Once is o.k.,frequently means it must somehow be your fault.

    I think there's too much made of food ,full stop.!

    As a Christian, Christmas is important to me but it's hard to focus on it's real meaning and not become stressed with deadlines etc.

    I hope you stay well over Christmas and thank you for taking the trouble to reach out.

  • This probably sounds silly but have you tried eliminating lactose/dairy completely from your diet

    I found that's what caused my problems and your 'timescales' sound a bit like mine were.

    You can use Pure spread in all your cooking/baking and, if you're not allergic to soya, soya milk and soya yoghurts

  • I understand completely what your life is like with such bad IBS as it sounds almost identical to mine!! I try and be positive and make arrangements to meet friends but often have to cancel at the last minute. As a consequence I don't seem to have many friends left! I know most people think it's all in my head but I know it's not. When I'm having a particularly bad bout I live on wheat free bread (toasted) with marmite and oatcakes with herbal teas. Not very exciting I know but after a few days of this my bowel does tend to start behaving slightly better. I try and stick to plain food which normally upsets things less but this is hard over Christmas when people tend to think you're a bore when you won't eat and drink masses. I too like to go to church, but often don't make it as it is in the mornings which is one of my worst times. My life is unfortunately completely ruled by IBS although I try very hard not to let it take over. Wish I had a local friend with the same thing so we could spend social time together but knowing each other's problem and therefore not being embarrassed.

  • Thank you for this lovely reply, I can really empathise with you. I've had to stop going to church on Sunday mornings and go in the evening instead. It is hard not to let IBS dominate, your flare-up rations sound similar to mine though my toast has wheat in it, I haven't tried oatcakes, now that's a thought. I've been afraid of herbal teas going straight through me but I'm at the stage where I'll try anything!!!I don't mind plain fare, even if others think I eat weirdly! I don't have a local IBS-friendly friend either, we'll just have to "speak" to each other on this Forum.

    Do you mind me asking in what region you DO live,btw?I live in N.E.Wales, near the borders with Chester and Shropshire. Sorry this is such a hasty reply, take care and I hope you have a peaceful Christmas.

  • Hi there, I had today that very same feeling, had to cancel all my plans today as i woke up bloated and in pain, lots of gas and couldnt evacuate in 1 go. Thats my reward for trying to eat healthier. i just think the only wayto cope with it is accepting it and not overthinking or let it get me dow . The more i try to improve the worst it gets. I think not caring to much bout is what better works for me, even though it doesnt avoid all the difficulte episodes trying to have a normal routine with ibs. Keep it upbeat, nobody said it was easy and in the end of the day i guess there are worst conditions than this. Cheers

  • Thank you for this lovely post and I'm sorry you're having such a miserable day. Some weeks I do try to ignore it and not personalise it: sometimes this works, sometimes it doesn't .Some days I can over ride it and say what the heck,I'm going out, other times it brings me to a standstill.You're right of course, I mustn't obsess about it, I'm luckier than most and perhaps demand too much "normality",things won't be the same as they were 10 years ago and I just have to accept this and adapt.

    All the best and take care

  • Thanks for your kind words...I guess only who suffers ibs understand how painful it is, physically and for our self esteem, to see how hard is to keep up with our plans and certain situations that many people doesnt ever consider as a challenge. That is why is important dont let it to get us down, as any other condition or illness, we must accept and manage it. The only but for me is that socially we appear just like weird people sometimes, when it shouldnt be, as it is not for a person with diabetes or other conditions. Cheers.

  • Good to hear from you again,Jalonso,I agree strongly with your last sentence...IBS in many people's eyes just doesn't seem to be a "proper"illness,I come across "friends" who ask me why I haven't got my "stomach sorted out yet" !! I also have asthma,osteo-arthritis and I had renal cancer 5 years ago: all perfectly "acceptable" states of ill -health!

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