Looks like it really is IBS

Hi everyone. For nearly 3yrs I've suffered with IBS symptoms, I've been to a&e twice. I've had numerous scans and tests, everytime showing up as nothing wrong.

Feel like I've been punched in the face today, as my results from a capsule endoscopy came back clear, implying that its IBS, and there aren't any other tests to be carried out. I know that stress can make IBS worse, but I'm feeling really quite low (I'm currently on anti depressants), because I was hoping the results would show something that I could treat. Instead, i have IBS. No medication works for me, I'm currently on week 5 of a FODMAP diet and have seen next to no improvement. I feel completely screwed.

How can I live my life like this? It wouldn't be so bad if medication eased the pain. I've tried so many different remedies. Not sure how long I can cope with this IBS. Any words of advice?

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16 Replies

  • That's awful news, sorry hear it.

    On a positive side at least its nothing more sinister.

    What fodmap diet are you following and how far have you gone with it. It sounds like so many people haven't actually found a specific food allergy.

    I've just started a complete no wheat, no gluten, no lactose etc diet following the monash Uni fodmap app. Hopefully I will find something as time goes by.

  • Thank you for your reply.

    I am glad it's nothing sinister, but at the same time, I was hoping they said it was something, as then I could either be helped, or learn to live with it. My boyfriend's mum for example, is coeliac, but she can deal with that now she knows.

    I'm on my 5th week of no wheat, gluten, lactose etc, basically the 5 different types of sugars that the body can't always break down. I know I can't handle lactose, and it was either bread or coke that put me in hospital the first time. Other than that, I'm clueless. I've cut everything out, but haven't been told how to reintroduce things.

    One question though, I'm not sure how long I'm supposed to do the 'cutting everything out' for? My dietician said 8 weeks, but I have seen on other sites that it is 8 weeks, including the time to reintroduce things...

  • Have you read Patsy Catsos's book, 'IBS - Free At Last'? If you haven't then I suggest you get it as it gives you a proper plan to follow on reintroducing FODMAPs. I did the diet before the NHS took it up and had to rely solely on the Monash app guide and the book I've recommended.

    If you've got diarrhoea-predominant IBS ask for a SeHCAT test to determine whether you've been misdiagnosed and actually have Bile Acid Disorder (BAD). 50% of people diagnosed with IBS-D actually have BAD instead and it's easily treatable.


  • Hi I've got ibs , was always constipated but two years ogo things changed. I now suffer badly with diarrhoea. Have had loads of tests and they say there is nothing wrong. I'm currently trying dairy free but could ou tell me what SeaCat test is please. Thanks

  • Yes, most general hospitals can do SeHCAT testing, if you Google it you can see exactly what the test involves. Results will tell you whether or not you have BAD rather than IBS-D and the treatment is called colestyramine which you make into a drink and take before meals.

  • I understand what you mean. It seems much easier to deal with a set illness that has a definite cause.

    But, IBS does have a definite cause.. it's just different for each person. For me, having a close to gluten free diet really helps, and staying away from prepared foods.

    I would follow the advice of your dietician. and try not to feel so hopeless. there is a cause, or causes, you just need to keep a very close eye on your food/drink intake and symptoms. you will find it and your dietician will help you.

    have you tried 'natural' remedies for your symptoms? by this i means, eating certain foods/drink, trying heat pack, aromatherapy etc? don't buy holistic medicines are they are often contaminated.

  • Also have you had the hydrogen breath tests to confirm if lactose, fructose are your issues for sure? Worth doing.

    I did the FODMAPS for 8 months, only just started to introduce foods last month.

    It might be worth you posting up here what symptoms you're getting and your daily diet...someone might be able to point something out. For example my breakfast used to be oats with almond milk banana, blueberries and honey. Within a couple of days of FODMAPS I changed honey to sugar but still have issues. So cut out banana and then blueberries. Left with oats in almond milk which I didn't like. But when I retroduced oats in home made flapjack I realised the oats were also causing me issues. So you can see its not always to see what's going on.

  • I'm sorry to hear you are struggling with your IBS, I know how debilitating it can be and how much it can drag you down mentally.

    Have you considered other triggers besides food? For example, do you become worse when feeling down, anxious or overly stressed? It might be worth keeping a mood diary - stress and low mood affect our digestive systems which in turn makes us feel mentally worse. It's a vicious cycle but maybe looking at breathing exercises, positive thinking (perhaps CBT?) and effective coping methods (yoga, exercise, mindfulness, the list is endless!) could help.

  • Have you tried a bile acid sequestrant? Apparently that can help with IBS - got to be worth trying if nothing else has worked so far, ask your doc if he's prepared to try you on one. Particularly useful if you've got no gallbladder! I hear you about the tests. All mine came back negative too, and for a while I was gutted (no pun intended) to the extent I almost wished I had something serious so it could be treated!! In the end the only thing I could do was accept the diagnosis and work on ways to be kind to my body and figure out what it doesn't like. I kept a diary for quite a while detailing my flare-ups and what I had eaten, what I had done, what I was thinking about etc etc to see whether there were any links. I discovered that I am dairy, caffeine and alcohol intolerant and I can't digest nuts, seeds, pulses or wholegrains. The other major link I found was to my menstrual cycle; my IBS flares up mid-cycle and just before my period, and I think this is related to my age (I'm in my mid-forties). Stress can trigger it too but stress is actually nowhere near as big a trigger as people (and often doctors!) make it out to be!!! Have you tried all the meds? I found that some worked for me where others didn't... I now take mebeverine (colofac) and amitriptyline and my IBS is pretty stable at the moment. Do the best you can to accept the diagnosis and make sure you give your body a chance to 'tell you' what it doesn't like! Good luck :)

  • Is it quite typical to be intolerant to so many things? How did you layout your diary? did u have a separate one for mood, food, symptoms etc? every time i try to keep a diary of things it ends up a mess and i can't follow it, how did you keep it organised? i appreciate all your advice.

  • I just kept it simple by logging the flare-ups when they happened, and looking back on what I had eaten in the last 24 hours, whether there had been any stressful events, what I had been doing, etc etc. My gastroenterologist told me that it's very common for people with IBS to be intolerant to lactose, caffeine and whole grains; the other things I found out on my own. Thankfully I am not intolerant to gluten, although I can't overdo it - if I have too many wheat based things I will feel the rumblings of a possible flare-up. The most important thing you can do is to do what works for you because everyone's biochemistry is slightly different and what works for one person might not work for another. One of the things that made me feel less stressed when my IBS was at its worst was the gastroenterologist telling me that IBS can give people much worse symptoms than something really serious....

  • Omg

    This is me too

    I've spent 8 days in hospital this year loads of scans etc and last week the doctors just said well that leaves us with ibs ! No explaining how to control it , I've ow been off work sick for 3 months and really need to get back

    I tried lactose and gulten free for the last few weeks then introduced milk this week and def got work , with your diet I think the best way to do it is to have a really plain diet of chicken and rice and see what happens


  • Hi titchylou I can totally sympathise with you-it's been over five years for me, unable to work (or claim any financial help), tried all the medicines/alternative therapies/diets and had every test with no result except that it must be IBS. I feel really down a lot of the time because I can see no future for myself where I can live a vaguely normal life that would allow me to leave the house/work/socialise without being in constant agony. I would say that big things for me to avoid are MSG/rice/onion/garlic/vegetables/nuts. Strangely enough alcohol is fine (the occasional glass of prosecco is such a treat) as is gluten. I have IBS-mixed so every day is different and yet always bad. It is a shame there isn't enough support out there for IBS people unable to work-I have tried the disability charities but they don't get how debilitating our symptoms can be. I think the Mayo clinic have said there isn't a link between stress and IBS which is a start. Apologies if this is a bit rambly but Oramorph kicking in :-(

  • hi . iv'e had IBS-D for over 20yrs. over the last year iv'e had all tests done and all showed nothing wrong . then as a last resort my consultant ordered a Isotope SEHCAT Scan [ you swallow a radioactive capsule and 3 hours later they scan you then a week later you get scanned again and they can see whats happening in intestines ] anyway it showed that i had more bile in intestines than i should have, so i was prescribed Cholestyramine . iv'e been taking it for abt 7 wks and have had abt 50% improvement with bowel movements [ from 11-15 times a day to 5-7 now ] but where as i used to know when i needed to go. now its much more urgent, but i was told it takes a couple of months for meds to work.so looking forward to more improvements as time goes on. Trisha from Ireland

  • Hi! I sympathise with you! However I hope I have the answer to your problem! His name is Donald Moore! He is a gifted and powerful psychic therapist! And can be reached at donaldmoorehealing .com! Best of luck! X

  • I know this is very old but i am having the same thing. i am gluten intolerant and have been for 6 years but lately milk has been giving me a problem but the lactose test and all the tests have been negative but i cant figure out why i get sick from it

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