IBS Hell

I'm suffering horribly on a daily basis with ibs. It sounds so innocuous: ibs. It ought to be called Pschyopathic Gut Syndrome as the pain is completely and utterly brutal and without mercy. There are times when I just want to die because of the pain. It's almost like I'm being poisoned and I wonder why on earth I'm being forced to live like this. It feels like a punishment of some kind. I'm not a bad person. I'm no better or worse than most other people, but I'm being made to suffer in the most hideous way on a virtual daily basis. Even Adolf Hitler didn't have to live the life I have. As I type this I'm actually crying as I feel so miserable and helpless. I'm only 52. How many more years of this torture will I have to endure? My life is hard enough trying to cope with crippling social anxiety without me having to put with this physical torment too. It may sound like I'm whinging and I know there are millions of other people suffering all kinds of horrible illnesses,but this unbelievable agony would drive the strongest of people to the depths of despair.

Well thankyou for reading.

Ian

20 Replies

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  • What have you tried, i.e. diets, meds etc? Is your doctor helpful? What other symptoms do you have apart from pain?

  • I've been a sufferer since 1981 and in all those years I've tried everything under the sun: high-fibre diets, antispasmodics, hypnotherapy etc. My doctor is sympathetic and has prescribed Lyrica which does help, but unfortunately it tends to cause constipation which means more pain! I suffer a lot from painful gas and wind as well as occasional diarrhoea/ constipation,but it's the pain which is the worst symptom. I use a tens machine which at least helps relieve the pain some of the time. Thanks for your reply.

    Ian

  • I agree wholeheartedly with sickandsore that the FODMAPs regime is something worth trying. You can do it without the support of a dietitian if you don't want to wait around. It worked a miracle for me, so here's the info:

    There are a lot of very misleading and just plain wrong items on the web about FODMAPs, so my advice is 1) follow this link: med.monash.edu/cecs/gas... which takes you to Monash Uni in Australia where the diet was (and still is being) developed. There’s a lot of info on the site plus if you have an iPhone there is an app you can download which is really useful especially when you're out shopping or in a restaurant. 2) buy Patsy Catsos's book 'IBS - Free At Last' which gives excellent guidance and a plan to follow. Initially, the FODMAPs diet cuts out 5 food groups, which you do for 2 weeks. If you've got a huge improvement at the end of that period, you know that most, if not all, of your triggers are in one, some, or all of those groups. It’s essential that the diet is followed extremely closely and ingredients’ lists on everything you eat must be studied carefully – you’ll be surprised at what junk gets put into our food! You then 'challenge' each food group in turn by reintroducing it into your diet and, hopefully, reaching some accurate conclusions. This worked for me, and, apart from a restricted diet, I now lead a normal life. I have found other triggers outside of the FODMAPs group, but these were easily identifiable once I’d solved the initial problem.

  • Seems something went wrong with the link in the above info, try this instead med.monash.edu/cecs/gastro/...

  • You must ask to be referred to a dietician and ask if you can try the low fodmap diet it will really help ease your symptoms im sure..You are not whinging I totally get where you are coming from i too suffer from severe pain so much that ive had an ambulance out!! Have the drs ruled out any more serious symptoms?? I had a colonoscopy late last year just to rule out any type of inflammatory bowel disease.

    A high fibre diet was hell for me..I take buscopan 2x4 times a day and paracetamol for pain (dont touch brufen as it can cause bleeding in the bowel or in my case its caused ulcers)

    Im waiting to see a dietician but thats next week, Ive put myself on a exclusion diet and feel so much better since removing wheat, gluten and lactose Also remove any obvious foods that produce gas, like onion,leek, garlic, beans, pulses, broccoli, cauliflower..avoid gassy, sugary drinks. Use decaf coffee and tea. But do push to see a dietician as you cannot continue to live like this, I know ive been there and when i risk slipping up on my diet i go back there and wish id had more sense!!lol

    My young daughter has autism and bowel disease and she too goes through hell im trying to gradually move her diet over to a similar one to ease her symptoms too.

    Please seek help and never feel alone there are lots of us suffering on here to vent off to.

    Good luck you will get through this..

  • Thanks for your reply. I'm away for a few days, so I'll give more detail later.

    Ian

  • Oh and another thing to mention, if you suffer like me with constipation..dont overdo the fruit!!! i was eating loads every day thinking it was the best thing but actually it caused a lot of the pain..keep to 3 max portions and eat fruits like blueberries, banana, strawberry, raspberry pineapple,white grapes and orange..avoid apples,persimmon,prune,peach,redgrapes and plums. And dont go mega mad on salad either as also causes gass in the bowel.

  • Your not alone, I to am only 52 and suffer on a daily basis, it's gets to the point when I think I'm dying, it is a vicious circle that's seems to have no end, I feel so ill most of the time, but the last three days I have excluded wheat, gluten and dairy hoping it will ease off, I so sick of sleepless night and feeling rough, but the more I stress the worse I feel.

    So I can sympathise with you whole heartedly,

    I thought I would right just to let you know your not alone

    I wish you well

    Regards

    Linda

  • Unfortunately there are only too many of us out there that absolutely understand what you are going through on a daily basis. I am only 28 and have never been able to hold down a job because of my crippling IBS. There is no help available unless you "tick the boxes" and sadly I don't. I have a supportive GP which is something-please keep fighting this and push and push to get help from GP/dietician/consultant. I also see a pain management consultant (most hospitals have a dedicated Pain Team) to try and find a solution that enables me to live a relatively normal life (no luck for the last 5 years but always got to have hope). I wish you all the best in finding relief.

  • Oh i know exactly how u feel ibs and nervous dyspepsia i have it dominates my life been bad 4 yrs im only young too i believe doctors n people should také it more seriously as its debilitating i cant work go out drinking friends or work as most of time im poorly im trying symprove at the moment a new live probiotic which claims it can help ibs its expensive though been on it a week n my tummy is still waging war but anything worth a try eh

  • KIM, can you post an update on how symprove is doing for you? Would be interesting to get some real feedback from a fellow suffer.Thanks

  • I can totally identify. I have IBS-C and Parkinsons. The pain is from hell. I've had some relief lately. I tried the FODMAPs elimination. Much less pain but very binding! So I've modified it, eliminating the worst offender groups, the one with broccoli, for one. I also highly recommend a physical therapist specializing in abdominal pain. I had to pay out of network (not covered by insurance) and it was worth it. Try to find it. There are exercises you can do that will relieve and prevent pain.

  • Thankyou everyone for your helpful comments. It's good to know that there are people who understand what I'm going through. Unless you've suffered this terrible pain , you can't possibly imagine how bad it is. I'll certainly check out the FODMAP. Anything is worth a try that's for sure.

    Ian

  • Hi

    As a thirty year sufferer from IBS I certainly understand what a struggle it is to cope with this condition. The symptoms and causes are so varied and changeable it's very difficult

    to treat the symptoms alone and I've learnt over the years to take a holistic approach, this has finally lead me to a place where my IBS is currently under control and I'm living a full life again. I would suggest the following as a holistic and lifestyle approach to the condition......

    Firstly and most importantly get a proper diagnosis of IBS, in my case my doctor referred me to a gastroenterologist and I had a raft of tests to rule out any underlying medical causes. Once they could found no medical issues I was diagnosed with IBS .

    If you can afford it join a self help group such as the IBS network for support and information and in my experience I really needed both.

    Research: you are already doing this by posting your question, Unfortunately as a typical young guy I tried to ignore my condition, especially as I was told it was all in my mind.This led to many years of unhappiness until desperation finally forced me into self help. Research into my symptoms led me to the following......... leaky gut syndrome...which can cause food intolerences and all sorts of other digestive issues which then led me to the four r's approach

    The four r's

    Remove, replace , re-innoculate and repair. Along with that Iwould add relax as I suffered from anxiety and stress, a great deal of which was caused by the IBS itself ! I researched this approach and implemented into my life along with relaxation techniques.This approach helped me greatly.

    Remember that we are all different and to tailor your self help to you.Also within your self help approach you may find one particular element that is a silver bullet and leads to a drastic improvement in your condition. In my case this was taking vitamin B12,for you it may be something else.

    I apologise for the length of this post and also if I don't reply to questions ( just don't have the time at the moment ) you may also find this same answer to other questions on the board as I feel I needed to share my experience. Please remember there is HOPE that you can control this condition :-)

  • Thankyou for your advice. It's very much appreciated.

  • try caster oil caplets. ive started taking them one a day and my ibs has completely gone. also cut out chocolate, onions, red meat and anything spicey. hope this helps xx

  • hi, do they give you cramps?as I read on one blog they did,I am like you you tried everything and done everything but never tried caster oil caplets,Thanks x

  • Thanks. I'll certainly try it.

  • no they don't give me cramps. maybe for some it doesn't work but its definitely worth a try cos nothing can be worse than ibs. ive totally stopped all other tablets etc now and only take the caster oil capsules and since starting them ive had no problems what so ever xx

  • Hi there everyone, I've never posted on a website before but really wanted to say that this website has been a real lifesaver for me. Thank you for all your great support. I genuinely thought I was going mad before I got my full diagnosis. The pain and isolation was horrific but having heard the success story of some of the "postees", I plucked up courage and demanded a dietician appotinment. They advised I give up lactose. I was very reluctant but my symptoms have vastly improved. At least 50% better. My family are sooooooo pleased that they keep giving me diary free recipes! I know it is really hard to continue BUT Keep talking and try one change at a time. Since i've given up lactose I have also given up caffeine, fizzy/ gassy drinks, onions and sweetcorn but the one change at a time I think was very important for me in gaining some control back in my life. The other bit of advice that has helped me a lot is simply to BE KIND TO YOURSELF!

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