IBS for one year-I can't cope

I'm 16 years old and contracted IBS last year. I've looked up tons of websites to see how I can cope with the symptoms and I've seen 5 doctors and 2 private doctors who all tell me that same thing, 'that I probably have a bit of IBS', apparently it can be stress related but I've always been a very tense individual but I'm getting really worried about my condition because in summer I seemed to be improving but very recently I have had extremely bad diarrhea. I've had to keep several food diaries and in correlation to my symptoms I've had to cut; dairy, fish, nuts ,most sugary products, some meats and spicy food out of my diet and honestly I'm getting sick of it because no matter how hard I try to avoid my symptoms they still come back. Recently I've only been eating bread and simple foods such as porridge and rice but I'm still getting diarrhea. My conditions are getting so bad that I can't go into school, my friends are suspicious as to why I'm ill half the time, my grades are plummeting and in the past year I've considered suicide over 50 times. I NEED HELP. I have no idea what's wrong with me anymore and I need someone to give me advice anything will do I just can't keep living like this any more.

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  • Hi Emily,

    Don't despair, we're all here for you and I know everybody will try and help. Rest-assured we know what your symptoms are like and there are several things you can try.

    The low-FODMAPs diet works particularly well for many people on this site. It isn't a diet-for-life (initially it's very restricted and makes you wonder what on earth you're left with to eat!), but it allows you to easily identify which food groups are giving you problems. Some people are very lucky in that they're pretty clear of symptoms in less than a week whilst it takes longer for others. Also, of course there are some for whom it doesn't work at all, but well worth a shot.

    To try it out for yourself, go to the website for Monash Uni (in Australia) where the diet was developed, there's a very good smartphone app you can download from there and I also highly recommend the book by Patsy Catsos, 'IBS- Free At Last' which gives a good plan to follow whilst doing FODMAPs and lots more besides. Be wary of getting info from any other books/websites as many are outdated, incorrect and conflicting. 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 one(s) affect you.

    Have you had:

    a) A SIBO test (to check for small intestine bacterial overgrowth)?

    b) A coeliac test?

    c) A SeHCAT test (to determine whether you have Bile Acid Disorder)?

    d) A candida test?

    e) A colonoscopy?

    f) A gastroscopy?

    Stay on this site, you've come to the right place.

    Roz

  • Thank you very much. I honestly didn't think I'd receive a reply so quick and I'm glad that someone had found a reliable source with detailed information on what I can eat. It's irritating that I can't eat food freely the way I used to, I'm just scared that I get a reaction every time I eat something, that seems to the case quite recently and I've become scared of food altogether. An eating disorder is the last thing I need. I'll try this diet and see how it works out.

    I haven't had any of those tests. I only had stool, urine and blood samples conducted various time in the last year.

    I recognize a few of the tests and upon looking up the others I understand what they entail but I'm particularly frightened of ever having a colonoscopy, and one of the private practitioners I went to did say that I should try to avoid having one. Other than that I shall see what action I can take with the other tests.

    Thank you once again, I feel a bit more secure now, hopefully your advice will help in some way.

  • So glad you found my post helpful. I'm not surprised you're scared of eating anything these days, I think a great many of us on here have felt that way, I know I did.

    Whilst you're waiting to try and get other tests done, you can at least give FODMAPs a try although I should tell you that you really have to commit to it to get it to work. Patsy Catsos has a good website at ibsfree.net and her book is priceless.

    You have to get a candida test done privately as medics in this country don't believe in it as an illness. A reliable lab is at: candidatest.co.uk. If candida is present in your sample, you clear it by diet.

    Earlier this year, I was found to have Bile Acid Disorder (BAD) and, according to the latest research by Prof Julian Walters at Hammersmith Hospital in London, 50% of people who are diagnosed with IBS-D actually have BAD instead. This is easily treatable and well worth pushing your doctor for a SeHCAT test which most general hospitals can do. BAD presents with exactly the same symptoms as IBS-D.

    Yes a colonoscopy isn't for everybody, but you can have a virtual scan instead (colonography) which has the advantage of looking at surrounding organs as well as the bowel, e.g. pancreas, liver, kidneys.

    I wish you well with all of this - keep us updated with your progress.

    Roz

  • I'm sorry for being a little over-dramatic, i know that everyone here is having a similar experience. I know that people suffer depression over IBS. I guess that's what I'm getting, plus I'm sort of kicking myself because I seem to be one of the youngest people in the forum :/

    Thank you for the links they're very helpful :)

    And I will try to get that test, I didn't know that there was a similar condition to IBS that displayed all the same symptoms...

    I will update how I'm getting on the forum, thanks once again for all you help :)

  • Emily

    I hope that you are getting a lot of support from your family which you do need.

    Try to have the SeHCAT test - although I haven't had this - at least it might turn something welse up.

    However, if your doctors surgery has the facility to refer you to a Counselling service I think that this would help you. I'm having counselling for depression at the moment and it really does help just to talk things out with someone outside your 'circle' also I'm having Reflexology which can also help.

  • Hello there.

    I've discussed the alternative tests that I could have with my mother and she thinks it's good idea to contact a Dr. to see if and where I can have them conducted.

    My parents don't actually know I suffer with depression nobody does except the people on this forum. However my parents are aware that my condition upsets me significantly and they're quite well aware of how it effects me on a daily basis.

  • I know how you feel all too well. I have had IBS since an even younger age than that, and you just feel helpless. I hated not going into school. Even though, I have a reputation for being lazy and never showing up to uni when actually my IBS on that particular day is too bad for me to be able to go in. Don't give up hope. I reached an extremely low point around the age of 17 when I thought this was never going to get better and I give in and can't face life. But it's okay. And it comes with practice as to how to manage it, and patience as to get your doctors to help you with it. The food diary is probably the best thing you are doing so keep on with that and it won't be like this forever. At least, you won't feel like this forever. Enjoy the days where your IBS is better for what they are. And take care of yourself when it's bad. Don't beat yourself up about it and just do your best. Keep talking about it, my friends are like a godsend in helping me through how it makes me feel. It'll be okay :)

  • Thank you for your thoughtful advice. May I ask what action you take when your IBS is particularly serious? At the moment I’ve only has starving myself as a solution when I have a reaction to anything I eat, and then having to slowly build up my food intakes after a few days going without.

    I don’t know if there are any alternative methods for me to gain energy throughout the day even if it means not eating any food.

  • Reading through your posts one item that I think can help is to avoid high fibre food items like porridge . I love porridge but have to avoid it. Also I take Imodium which gives me confidence to go out and not feel that I need to find a toilet all the time . Imodium has allowed me to take much more control of my ibs . We are all here for you . If you need more help just shout , we are here to assist each other .

  • I see. I was actually having porridge as it's a staple food but that makes a lot of sense now, thank you for your advice.

  • Hi Emily, you've come to the right place to help you get on the road to recovery. Roz has given you the perfect list of things to try and get checked out. Your dr should be able to you organise everything on Roz's list except d) candida. Because western Drs do not recognise its existence.

    So your first point of call is the Dr and all the other tests.

    Whilst all that is happening for the candida try and find a naturopath or nutritionist who specialises in testing and treating that.

    When you start the FODMAP diet, just post up here if you need any advise or further info as sometimes a food could show as FODMAP safe but some people still have a reaction so its worth discussing with others in the same boat.

    Chin up and well done for taking the steps to sort it out:-)

  • Thank you very much for your advice. I don't think my parents will approve of a test that a isn't recommended by Dr's but all the other tests are conducted within the NHS so I should be okay.

  • I know what you mean but Drs do not know everything. There is a world of symptoms they will not know about and in the end they will only treat the symptom as opposed to getting to the root of the problem which is where alternative medicine comes in.

    If you are really lucky there are the odd Drs who will refer you for alternative treatment so have a chat with the Dr if after all the tests they find nothing. I really do hope your parents change their mind about this. If not than all is not lost you have this page to come back to for advice.

  • Thank you very much, I'm going to get an doctors appointment soon so i will ask them about alternative tests and treatments then :)

  • Don't give up! You will get better. All good suggestions above. Keep the focus on what you can do today and take a deep breath. Worry and stress -- tell them to get lost. Do something fun every day, even if it's taking a nap or going for a walk in a beautiful spot.

  • Thank you very much for your support, I appreciate it greatly! I'm finding it hard to relive my stress as I have mock exams and I am unfortunately in the year I have my A levels. Are there any solutions you find particularly effective when reliving stress?

  • Hi Emily. You can try:

    1. yoga at a local gym.

    2. Or meditation which some areas do for free. Look up 'free meditation classes' and I am sure you will find something.

    3. Or try this link to Deepak Chopra who sometimes does free online mediation. There is one on at the moment you have missed 14 days but I think there is another 7 daysleft. Register and listen everyday

    chopracentermeditation.com/...

    3. Look on YouTube for 'relaxation or stress relieving techniques'

    4. Remain positive

    5. Exercise. As Pat says a walk in the park or somewhere you like can do wonders

    6. Hypnotherapy is very good for stress. Speak to your Dr as he may be able to refer you.

  • These look like great solutions. i will put some of them into action as soon as possible, thank you very much :)

  • I assume you mean relieving stress (making it go away)? I talk to people about it and LISTEN to what their experience has been. I'm a Buddhist so I chant. Prayer and faith are very helpful in relieving stress. I don't blame myself for my condition but at the same time I know I'm responsible for taking care of myself. Somebody always needs a hug. When I give a hug, I usually get one back. Enjoy your A levels! (I know, I was like, WHAT?, when someone said that to me during my exams, but then it made sense.

  • I'm very appreciative for your support, but unfortunately I'm a extremely strong atheist and although I have seen incredible breakthroughs that people have made following faith I am unable to abandon my own beliefs. I wish I had such faith, but I don't. But I am happy that it works so well for you. Once again thank you for your kind comment :)

  • I'm an atheist too. That's why I became a Buddhist. Faith is not the monopoly of theistic beliefs.

  • I have tried following Buddhist teachings and I've always been interested in the concept of different faiths however I live around people who aren't open to meditation or chanting in fact the environment I live in is one in which I can hardly breathe without being persecuted for it.

  • Hi Emily,

    I've had IBS for a similar time to you and equally struggled with diet (it does get very boring) however I have found that some of the medications the Drs gave me, made my D worse and one gave me v bad insomnia. Diet has helped reduce pain - wheat and onions or anything with bubbles. FODMAP diet has helped firm things up slightly but don't forget to consider any meds prescribed. Good Luck. xx

  • Thank you. It's really difficult to find foods that are actually safe to eat, but I've been finding that foods that trigger my IBS keep changing do you experience this as well? I only have one consistent food that hasn't effected me badly the entire time I've had IBS and strangely enough it's cornflakes :/

  • This will happen due to the bacteria still thriving.....back to the SIBO and candida treatments.

  • Hi Emily345,

    I thought that the foods were changing but then I found some things that I was not expecting to be a problem (honey & Soy and rice milk) were if had too much and I also learned that some things that I thought were a problem are actually OK in vary small amounts. Its been a total minefield and I'm still not totally on top of it but managing a lot better than I was. In some ways I'm best having a little of most things except the really bad triggers. I recently had the SIBO hydrogen breath test and it came back negative. Not been tested for candida but from what I have read you have it naturally in your system anyway and that's why they do not test for it in the UK. I appreciate it could be a problem for some people but as scientists can't agree how much is a problem I think I'll just keep trying to get the good bugs going with probiotics, porriage etc and expect that over time my system will return to an equlibrium. Post Infective IBS has a good prognosis for full recovery over time but its a couple of years not months :-( Yes its a total mare when its bad but trust your body, its constantly trying to fix you and as bacteria outnumbers your cells 9:1 it has a fight on but try and rest as much as you can and give your body what it needs to fix you good and proper :-)

    Just one other thing - does your "D" get worse or better around your period? I've noticed that mine changes with my cycle and from what I have researched its to do with the hormones that are released...just something to look out for that might help you predict days when you need to be closer to a toilet. Its not great - I know but its good info to tell your doctor if you notice anything.

    Cornflakes they fine with my guts too but watch out having too much dairy - I can have a little milk a day but too much and primes the dreaded "D" (or it does in me). Take Care. xx

  • Thank you for all your advice. May I ask hoe long it took for your IBS to finally calm down? I'm still getting horrible boughts despite having it for a whole year. I have found that it seems to get worse when I'm on my period but recently it's been going haywire for the past month since my last cycle. I've started this months cycle recently and I'm getting worried because my condition seemed to be getting a little calmer near the end of Summer and at the start of September. I'm finding that I have to fast quite often because everything I eat triggers my IBS even bland foods. I'm, not permitted to take Imodium unless it's absolutely necessary (like if I have an exam or something) I'm trying to avoid the stop-go cycle you can into but honestly I still get diarrhea and constipation on a regular basis even when consuming recommended amounts of fiber.

  • I only get D and it's been a very slow process. Fiber e.g. bread even the claimed wheat/gluten/milk free makes me worse hence you need the food diary people have suggested to try and work out what works or does not for you. Different foods give me different symptoms e.g. bread gives me gas+++, potato if have too much gives me pain, onions gas & D, Dairy = D etc etc. Its not perfect as I said b4 if I have too much of the same safe food e.g. rice with bland stew then by day 4 of having it once a day I start getting D even thought I not had any known triggers at other meals. Its taken over a year to get to where I am today - onset sept 2012 - and had some really bad months when trying different medications and diets I no were near to what I used to be like from a toileting perspective but its more manageable (2-3 x daily) and generally not jet powered waterfall except bad days, mostly soft & very small – but from where I have been its a total result! I have had to stop work – not something I was happy about but making too many mistakes etc I just had to accept that I could not do it well enough for them or as well as I used to despite wanting to. I still not working full time but doing a few hours a week and that totally takes it out of me so trying to go to classes 5 days a week would be too much, even now.

    I understand why you feel better not eating - I found that in the early stages (it made me feel more clear headed) but I knew it was not good for me and made myself eat small portions at meal times so at least the toileting was not too bad. Over time you get your appetite back and as I have always enjoyed food I saw this as a good sign. I do allow myself to have foods I enjoy that I know have a bad effect on my guts occasionally as a) I enjoy them and get pleasure and b) this often involves a meal out with friends and so long as don't have anything important next day just put up with the consequences as it was worth the quality time with friends/family. If I have something the next day I either only eat what I think will be OK or if know its all bad I just say sorry I can't go - your true friends/good family would look at where going and help find somewhere that OK for you. I am honest with my friends and tell them when I am eating something that I should not but explain the enjoyment and that not going anywhere tomorrow. This helps them to understand when I say I can't go somewhere. Some people are stuffy and say you should never eat anything that might upset your guts....I just explain how restrictive that would make a diet and takes the joy out of eating. Decent people understand, unreasonable people or those that don't have as much life experience don't. It’s hard at your age as you all judge each other but hopefully you have one or two good friends. If not through your life you will find them - I had to wait till college and work to find my friends for life.

    My sleep is still not right and get night sweats regularly - I though I had found a single food link but over time found its’ more complicated. There could still be something in my diet and given time I might find it but it all just takes time and patience with yourself..as well as the food! LOL! It can and does get better, relatively, over time. I'm not out of the woods but better than I was and I think honestly given the scientists don't fully understand it all yet it’s about as much as I can hope for. Finally don't let any Dr make you feel bad and that it’s all in your head - if it was the food you put in would not make a difference - it does for me and I'm sure it will for you but the most difficult thing is figuring out what you can and can't get away with. That said nerves before exams will make it worse, but it’s not like you are thinking yourself poorly – it’s normal to be nervous before an exam/test but with IBS due to the direct link from the brain to the guts, it does make it worse. If you did not have IBS you would probably feel butterflies – I always used to before exams – IBS just turns those butterflies into toileting issues.

    It’s your decision but it might be worth thinking about taking a year or so out while you get the old guts under control. Reading your post you seamed to improve when school/college etc were not placing demands on you e.g. to attend classes daily, do test, homework etc. (improved over summer hols and took at turn mid Sept when you went back and been getting worse since then?). School/college/uni is hard work and stressful at times you need to be well to do your best and if you’re struggling to eat you can’t/won’t be getting the fuel your brain cells need to work at their optimum. To me this puts more stress physically on your body, never mind the mental stress of trying to fit in/look good/do well. Its a hard decision as I would have wanted to stick with my friends but you could use the time well to get some work experience or volunteer so you have some good life skills to take on to college/uni/later jobs. Volunteering is good as they can understand if you can’t always make it and won’t hold it against you like an employer might. Just an idea and it depends if your family can support you while you get yourself better. If at high school or college they might need to help you by writing to the exam boards and getting a deferral or at least have your circumstances taken into account at exam time. It might be an idea to book a meeting with your parents (optional but if at high school I would as they can explain how you are at home), you and the year head. You may need letters from your GP to support your case but an initial meeting may help you (and your family if invited) understand what is and is not possible at school/college and what evidence you may need to supply. It’s been a while since I was in education but your teachers will want the best for you so it’s worth asking what can be done.

    You will get there you just need a plan...if that plan does not work...get a new plan...and keep making new plans till you get one that works well for you ;-)

  • The IBS will always appear worse during your period as the bowel muscles and the uterus muscles are connected. The hormones released that cause the uterus to contract to remove it's lining is the same hormone that controls the cramping of the bowel. Hence the bowel will have a good clear out when you are on! It's the same with women when they are in labour, the bowel is stimulated to have a good clear out as well as the uterus is trying to get the baby out!

  • I've lived with IBS since I was 11 (I'm now 24) and although it's never made me contemplate suicide, my IBS is severe and can be incredibly stressful and upsetting. It is however a part of my life.The most important thing to understand with IBS is that every case is different. Sadly , this is what makes it so difficult to diagnose. However, the beauty of it, is that everyone has different triggers and different methods of coping. I personally have trigger foods such as onion, peas and yeast which upset mine. But also stress and anxiety have a huge effect. Like many other sufferers, i can occasionally find myself in a vicious cycle where what I eat upsets my stomach, which then makes me stressed and makes the condition worse. Since you have only recently been diagnosed, it takes a lot of trial and error to find what works for you to control the IBS and to find methods of coping when it does flare up. Personally, i believe the more naturally you treat the condition, the better. I find sucking on a polo mint is a life saver. It's very calming and helps to keep your breathing steady. I also always keep a little bottle of lavender oil with me again to help keep me calm. Yes the diarrhoea is horrible, but it's not harmful and the more you make people aware of your condition, the better it is. You say your friends are noticing, well I'm sure they are and are worried about you so maybe just tell them what's going on so they can support you. Tell your teachers in school so that if your having an off day, you can just get up and go to the toilet without asking or making a scene. And for those occasions where the cramps and diarrhoea won't settle, I use immodium and buscopan and a hot water bottle which soon settles it.

    Just keep trying out new methods. Eventually you will find something that's right for you. It's not going to happen over night, but it will happen x

  • Just found this post and though I have no solutions for you, please know there are other people out there feeling the same which means you always have support from sufferers of this and hopefully one day, the medical profession will find things that really work with this number of sufferers! My IBS began during my A-levels so I can completely relate to that. I'm still nowhere near working out how to get better but some things have helped: I've had a few sessions of cognitive behavioural therapy (available through your GP on the NHS) which can help challenge your worries in a proactive way. Also, if your periods make it worse, have you tried any form of hormonal contraception for making your periods easier which can then make IBS easier at that time? GP tried me on 5 different pills to no avail but now I've had the IUS fitted which seems to be reducing my previous 3 days bedridden with period/IBS issues a month to one or none at all. A dietician referral can be really useful too as I stopped eating very much at all through A-levels for fear of being ill and some foods I cut out, I really didn't need to. It wasn't until I had the support of a dietician though that I was able to have the confidence to reintroduce such foods again. I share your fears on the colonoscopy thing- I've been referred to a gastroenterologist after 5 years with IBS and really nervous about if they're going to want to do that. Also, I found the herbal remedy Kalms can help through stressful exam times. Finally, don't be scared to seek support. I'm currently in my final university year finishing my dissertation and doing my final exams (so very stressful time in general and with IBS!) and have requested support for the first time in my degree. I felt too proud at first but, after suffering with it so much, I spoke to the university and now they have measures in place- such as taking my exams in a separate room to huge exam halls to reduce the anxiety of disturbing people if I need to leave to use the bathroom (and also having measures in place to 'stop the clock' if I have to use the bathroom so my exam time isn't deducted). How are you getting on now?

  • Take lomotil if u are in the us u can get them. There the best medication as it stops any outbreaks. Would also ask for a sehcat test as u may have bile salt malobsorbtion questrin can control that as well.

  • I now have the same problem and I am seeking for help!! I have frequent urge to have BM and usually i can do it when i m home but since i m outside like schools, i can not use the bathroom and my tummy just kept bloating bloating and camping. THIS HAS BEEN KEEPING AWAY SCHOOL AND SOCIAL LIFE!! 

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