"Insanity is doing the same thing over and over again, but expecting different results"

I've not been a member of this forum for long, but in my short time, I've read many stories, mostly gruelling, painful, depressing stories which are often hard to apprehend. As an 'IBS' sufferer myself, I can relate to many different aspects and individuals within this forum, on both a physical and emotional level, something which seldom exists in our modern public society - so thank you all for that.

Having said this, I thought it time to unveil my own story; where I've seen success and where I've seen defeat, and most importantly, how I cope - let's call it 'A Twisted Tale of IBS'.

Please note, I use the word 'IBS' very loosely throughout - in my personal opinion it's a pathetic term used to excuse patients and tick a box, but it's the only term we know unfortunately.

WARNING: 1. This might go on for a bit... 2. I do not have a cure. 3. If you just want to see how I cope and avoid the laborious sob story, skip the first 7 paragraphs.

So, to kick it off, I was diagnosed with 'IBS' at roughly the age of 21. However, the first noticeable signs of it were when I was very young; even as young as 5. At a young age, I was diagnosed with 'stomach migraines', which would make sense, although I suffered migraines as well, so either way you look at that one, the doctor was basically just saying 'yeah he's f****d'. I would have an 'attack' every 2 months or so, severe cramping which was overcome by a good blast on the bowl. At the time I assumed this was a relatively normal function of life, different foods, weather, emotions, and that everyone just needed their moment 5-6 times a year (how wrong I was...).

I dealt with this as and when it happened and to be honest, it was manageable. This was of course until I decided to go to University. A wicked concoction of IBS fuel was brewed - the vast alcohol/nicotine consumption, lack of sleep and stress of deadlines, not to mention the constant upkeep of social conformity (not that I've never been myself) constantly hanging over my head. It was at the end of my first year of University that I was diagnosed with IBS, little did I know this world of fun and games and positivity was about to be swallowed whole, cramped up and blasted out the other end.

The summer of 2013 wasn't all that bad; I discovered loperamide pretty early on, a magical little antidote which has served me incredibly well. For those that don't know, loperamide basically just sticks a cork up your rear - very handy for IBS-D. I could have days/weekends out with friends, enjoying the summer and making the most of my University period, just a stomach cramp here and there followed by a couple days off (on the toilet). All I would need is 2 loperamide and I'd be set for the day.

I'm going to make the next 3 parts of the story very short and as painless as possible. 2nd year of University - loperamide needs a 'time off' period, would advise not to take daily, gluten free didn't work, drinking more alcohol doesn't help, buscopan - nope, mebeverine - nope. 2nd year was basically a mess and IBS got worse.

Same again for 3rd year. I decided to do a placement and so I was working a 9-5 job this year. Luckily this job wasn't very demanding. Tried low fodmap, thought it was working, didn't really know how to manage it properly, still drinking alcohol/smoking far too much - loperamide still my absolute saviour at this point, taking them as and when needed. 3rd year again a mess, IBS got worse again. This is the point I met my girlfriend, who I must say has been amazing, she makes an appearance at the end. Oh and this year, thanks to loperamide, I actually ran a half marathon, cycled from Buckingham Palace to Windsor Castle and completed the National 3 Peaks challenge (7 loperamide in 24 hours...) all for charity - something I am still to this day so proud of.

4th year, final year of University. Stuck to low fodmap, started to understand certain foods that would upset me, still on loperamide (taking 2 before a 4 hour stint at University... awful I know). Still drinking alcohol/smoking, had McDonald's at least once a week (I will never not love McDonald's). No improvement, poor standard of life, started to really affect me emotionally, socially and physically.

For the past 4 years, I'd always been in a routine where I could eat by myself, near the toilet, rush off if I needed to and generally live a fairly off-the-go life as far as pressure is concerned. This led me to believe that I could manage my symptoms. But this is not living, and for anyone reading the above thinking they might currently be going through what I went through, stop. That is not living, that is existing. It was only when I very recently started searching for jobs that I realised how drastically this needed to change.

6 months ago, interviews, assessment centres, phone calls and all else was manageable. I took each recruitment step day-by-day and pursued my dream career (not) in IT sales, where I would make truck loads of money and my quality of life would miraculously smash through the ceiling of depression. Within the first week I was ready to quit. I had spent every evening in my hotel, eating plain sushi, taking a loperamide every morning, not socialising and literally just being 'that guy' - this was not me. I'm not too sure why, but I stuck at my job, based in Manchester, 4 hours from home, sticking to a very basic (low fodmap variation) diet. I was agonisingly depressed, driving my girlfriend away, making no friends, quite frankly on the borderline of just calling it a day and topping myself. Then, as I'm scrolling through this glorious IBS forum, letting story after story justify my misery, I stumble across the ileocecal valve, which in turn led me to kinesiology. Just in case you're skimming through this and missed that - KINESIOLOGY.

Kinesiology - 'the study of the mechanics of body movements'

Now I must remind you, this has been incredibly recent. My first appointment was no longer than 2 months ago, my 2nd last week. It's also worth noting my kinesiologist started her line of work due to her own IBS. Kinesiology, for me personally, has been by far the most substantial breakthrough I have ever had. All I can say is that I am so devastated I had not known about this prior to starting University - although they do say hindsight is a wonderful thing. However, let me repeat, FOR ME PERSONALLY, this has worked miracles, this is not a cure, I do not believe there is a cure or ever will be in my lifetime, least we can hope. Now aged 24, I do believe this is a turning point in my life.

I am not a kinesiologist, and I can't even begin to understand their line of work, but in short, they'll poke and prod and push all areas of your body, fling your arms and legs around, test loads of medicine and food groups and to be honest, most of it does seem like utter BS - but it's all good fun, and it's worked for me. I was originally given magnesium and enzymes to take, as well as a strict diet (basically chicken/fish, cooked veg and fruit) which gave me incredible results. I'm now on acids and an improved diet (I'm even allowed rye - rye is gluten!) and generally I feel like I'm glowing. To add, unfortunately I'm not allowed to exercise as this will stress my adrenal gland, heartbreaking I know (not that I need exercise, I'm 6ft3 and weight 10st, give or take a few pounds). I suddenly realised it's not just a bowel problem, you're entire body is interlinked in ways you'd never even imagine and it's phenomenal how particular areas of your body will impact others. On that note, interesting fact for you all, 90% of serotonin is produced in the digestive tract. Serotonin is the stuff that makes you feel good, an IBS attack clears out or disturbs your digestive tract. Clearing out or disturbing your serotonin therefore can have a major impact on your emotions - hence why I probably see so many distressing tales on here. Definitely a fact you can use as a 'f**k you' to those that simply can't comprehend it.

My bowels are not fixed - not even close, but I've seen a significant improvement in the last 2 months which has actually given me hope. It's also not so much my bowels I'm concerned about, it's how I feel, the positivity I am experiencing which I haven't felt in years. I'm now basically just eating tonnes of green veg and fish and eggs and I feel great; solid stools and masses of energy. I still get nudges from my bowel to remind me I'm not okay, and by all means you can't go to a restaurant and ask for salmon and broccoli, but I'm happy with the way it is right now and my job is manageable (bearable by content). This in mind, anything off the diet or a slip in routine can have awful side effects as I found out last weekend (yes that's right, cramps, sweating, headache, lack of energy and shock, I nearly s**t myself, again), but I can accept that, I can accept a day at home as a result of indulgence (in this case, 5 pints of pale ale (the good stuff (very good))), that suits me. Oh and my girlfriend, she accommodates to my diet perfectly, she's even changed her own diet to pretty much match my list of tolerable foods even though I wouldn't ever push it on her or anyone around me - safe to say I got very lucky with that one, she's not bad looking either. The rents are quite enjoying the diet too in fact, salmon, rice and peas is a home favourite at the moment! I intend to see my kinesiologist regularly but also explore other avenues, other ways of making myself feel better, improving my standard of life; I've recently been intrigued by bile acid malabsorption and I'll be looking into that very soon, but all is yet to come.

From everything I have said, if there's one thing I could ask you all to take away it would be this; don't stop trying. I could've scarred you all with horrific stories of bowel eruptions, fainting, anxiety and depression, but I'm sure there are people on here with far worse or more complex symptoms than my own and people who suffer agonisingly, day after day. But we can't give up, we can't stop trying. Doctor's and GP's will dismiss us through laziness and lack of consideration and I won't even begin to talk about the people around us understanding our concerns, because trust me, they never ever will. If you want to go on complaining, grieving and simply existing, then do so. There is always someone struggling in the world, always someone bearing someone else's grief, always someone with a problem; but there is always someone worse. For those of you that want to do something about it, go do something about it. You can try hammering screws into a piece of wood for as long as you like, but no one in this world is going to hand you a screwdriver, you've got to go get it.

For those of you reading this today, go have a fantastic Friday, take every hour, minute and second as it comes, enjoy the things around you and smile at everyone you see. If you want to indulge then do so, but know you are indulging. Be with the ones you love, the ones that makes you happy. Be a better person today than you were yesterday, and everything else will fall into place.

Good luck to you all and have an amazing day, from your partner in bowel dysfunction.

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14 Replies

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  • Spot on son,I'm a lot older than you,and suffered chronic "IBS" for the last 12yrs,gradually getting worse. I won't go into to much detail,but I certainly agree with you on a few things. 1, being I believe in "IBS" being a label for when they have no answers for us,I also read of a doctor on here agreeing it's a label,my GP said so too.

    As for research I spend most my days looking up anything that may relate to me. And it is existing not living,me and my hubby haven't had a holiday in 10yrs.

    I've been on a life support machine twice,once with a chest infection,I have Emphysema,and once for heart failure,I have severe Rheumatoid arthritis,my health is in a pretty bad way,YET this so called "IBS" has been my most debilitating illness.

    I also agree with you on we need someone to take a look at all of our body,like a functional medicinal practitioner,to join up all the dots.

    And most definitely NEVER give up. Doctors,family and friends,no matter how careing they are,have any idea,what my stomach goes through on a daily basis.

    So I would just like to tell you,from an older person to a younger person,you have ticked all the F*****G BOXES. So never give up. Good luck to you 👍

  • Isn't it funny how of all your health, the one illness affecting you the most is the one we still don't have a 'cure' for.

    I commend your positivity and considerate nature, the way we should be, regardless of our health - a great role model.

    I wish you all the best for the future and for your health and have a wonderful Christmas/NYE! :)

  • Wow....now,that's a post !

    Takeaways.....

    I feel better myself when I exercise ....which fortunately I can without too much problem

    Yep keep trying.....and never let up with seeking the answers .....doctors may fob you off but keep going back.......IBS and it's complications make life a very difficult journey ......so keep fighting it ......we will triumph !

    N

  • I'm allowed to swim, which for me personally is fantastic as I used to swim competitively when I was much younger. Really looking forward to getting back into it again!

    Thanks for your reply, and you're right - we will triumph! :)

  • well said !!

  • Hi there I enjoyed your post, very interesting, beer there done that, not kinesiology. Look up Dysbiosis and see if this fits you. Bad bacteria living and multiplying in the gut. It lives off carbs. Let us know what you think

  • Just done a very quick skim - it mentions bacteria crawling back to the small intestine. In this case, it sounds like that's linked to the ileocical valve (the valve connecting the smaller and larger intestine). This valve can often been manipulated through kinesiology (sorry to bang on about it...), or naturally balanced through a very clean diet.

    I will do more reading into this though, sounds very interesting, I'm also fully off carbs at the moment as well, so hopefully those little b***ard bacteria are starving to death.

    Thanks for the advice! :)

  • Thanks for that, I did not know about that valve. Let me know how you go without carbs. Cheers

  • Wow, what a post and very well done to you and for considering and actually overhauling your diet completely - at such a young age that's very good, I have read through every paragraph. I was diagnosed back in 1996 and although not; as bad as some on here I still get some bad times and my main symptom is wind and pain. I have removed broccoli, cauliflower, sweetcorn, nuts and skin on fruit from my diet and am finding it really hard as I always had a plate full of vegetables.

    The reason for me removing those from my diet is I have learnt that they are the ones that affect me most i.e. they give me a lot of pain. I also have problems with phlegm and I know I am going to also have to cut out dairy. I also removed them from my diet as I had a Colonoscopy back in August (very different from the one I had back in the 90's - much better) and 3 days before the procedure I had to cut out a lot of fruit and vegetables and only eat low fibre; I found this very tedious but have to say I felt so much better. The day before the procedure I was only allowed sugar sweets like wine gums (not red ones). That is the reason I cut out high fibre foods.

    I have found quite a few people on here have followed soluable fibre diets i.e. root vegetables, fruit without the skin on etc and say they feel so much better. I am following that diet now but I don't feel I am eating as healthily as I was before.

    I have to say your diet does sound good but how do you manage without carbohydrates as I can never think what else to eat in their place? I am a person that does exercise, I do a fair bit of cycling.

    I will have a look at Kinesiology.

    Thank you so much for being so honest with your post.

    Here's to a very good future for you.

    :)

  • Apologies for the very delayed reply!

    Sounds like you've done an incredible job identifying your trigger foods - a very complicated and frustrating task.

    In terms of carbs, I can tolerate rice. I am going to reintroduce sweet potato soon as well, see how I get on with that. Potato, wheat and barley are a massive no-go, although surprisingly I can tolerate rye!

    Agreed, cheers to a good future and best of luck with all to come :)

  • Not a problem. Best of luck with the sweet potato, I eat that with no problem but am eating peas - naughty as I shouldn't but love them. Honestly I do wonder what we can eat sometimes.

    Am starting to look at dairy free after Christmas.

    Hope you have a lovely festive season and Happy New Year to you :)

  • I do wonder the same! It'll be a water-based diet before long.

    Dairy free has always been a no brainer for me - cheese is my huge guilty pleasure though, happy to suffer for cheese.

    Merry Christmas and a Happy New Year to you too! :)

  • Oh you sure are a person after my own heart lol Cheered me up no end this did. Once we have got through and over or even under Xmas this year, after two years of abject misery of family bereavements family in the ICU for months bad diet crap job, financial and work pressure, I intend to chuck it all to the wind, and go back to yoga and other things I found helped me. But first like you I have to get the bowel to behave itself, which has been hard this last couple of months, due to what has gone on, so back on the mebervine (colofac) just to give myself wind relief and pain relief! Will be looking into the Kinesiology, although I do enjoy a walk with or without the dog. Ive always made fun of my bowel problem and as far as Im concerned now, my friends take me as I am and all my quirks. So Good on you and continue to fight the good fight

  • I've heard wonderful things about yoga.

    One thing I have come been told recently and read a fair bit online since, is that our stomach/bowel is like a 2nd brain. We have so much emotional connection with our digestive system it's incredible. You're so right - calm the bowel first and then tackle everyone else's s**t.

    Walking is the least demanding exercise and is wonderful for your general well-being, just being out and about, enjoying your surroundings and get some fresh air.

    My friends too have come to terms with what I have, granted they can't even begin to understand it, but they're very aware of it!

    I admire your positivity and forward thinking, we're not in this alone!

    I wish you all the best for your future and let 2017 be a year full of optimism and laughter :)

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