Struggling for help

I've been suffering from IBS for 3 years now, having started aged 36. I'm male and have had no other instances of IBS in my life. Repeated visits to the doctor have found nothing through blood tests or a sigmoidoscopy. I have tried all sorts of other things including Aloe Vera, grapefruit seed extract, exclusion of alcohol, caffeine, wheat. A private stool sample I had done found high levels of wheat in my gut but the proposed remedy (grapefruit seed extract) made no difference.

I struggle to classify my IBS. Constipation or diarrhoea don't really cover it. It is the same every day without fail, starting with discomfort in the morning alleviated when I first manage to go to the toilet around 9am. Mornings are bearable after that. As the day progresses I go regularly (5-10 times a day), but by the afternoon it is harder to go and the discomfort increases. By evening I'm in great discomfort and can rarely go (probably because nothing left to come out). I haven't gone to bed or woken up feeling comfortable for 3 years. It is ruining my life and I'm getting quite depressed by the relentless nature of it. Anti-depressants (now off them, probably going back on) have helped with state of mind I think.

I'm not convinced there isn't something else underlying it. I know IBS is very varied, but many people talk about avoiding the things that brings it on and getting it under control somehow. Nothing I have done has even touched the symptoms, and I'm getting steadily worse as time ticks on.

I'm really just hoping for more ideas. More suggestions of things to try, whether it be diet or other. Or has anyone had a similar version of IBS and found something that works for them?

Thaanks

14 Replies

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  • Hi,

    Just to put your mind at rest a bit, IBS which is neither D nor C is common enough, so you're not alone in that and, for many people, it starts up quite suddenly at any age with no previous problems - it did for me.

    You seem to have had some appropriate tests done to rule out underlying causes; because of my own experience, however, I strongly suggest you ask your doctor to refer you for a defecating proctogram which reveals exactly what your bowel does when it's in action. It's not a very dignified experience, but it's completely painless and non-invasive. It was only when I had one late last year, that I finally found out the causes of the remaining 50% of my symptoms and have been able to remedy those very successfully.

    I gained control of the other 50% by doing the low-FODMAP diet and I'm surprised that your GP hasn't started you on this as it's usually one of the first things the NHS recommends these days. It's a tough regime for the first 6 weeks or so as you really have to be strict with your food. You initially cut out several food groups (they'll almost certainly include all your favourite things!) then, if you find your symptoms improve - proving that, at least some foods in those groups are giving you problems - you then reintroduce them, a group at a time until you can pinpoint your particular demons. That isn't to say you won't also find a few 'safe' or low-FODMAP foods that cause symptoms as well, but by keeping a detailed food diary, you can usually spot these quite quickly.

    The diet was developed at Monash Uni in Australia and you can get the info you need here: med.monash.edu.au/cecs/gast...

    There's a brilliant app you can download from there which is priceless when you're shopping and eating out. An excellent book to help you with this is, 'IBS-Free-At-Last' by Patsy Catsos, an American dietitian who is Monash-trained.

    There are a lot of misinformed, badly written, contradictory and just plain wrong websites out there about the diet so I strongly urge you to stay with Monash.

    I also suggest you join The IBS Network (whose forum this is) at: theibsnetwork.org

    Amongst other things, it has a helpline and you can also put questions to a doctor who specialises in IBS; it was he who told me to try the low-FOD diet some 6 years ago, long before the NHS adopted it.

    Read as many posts on here as you can, even if they don't seem to relate directly to your issues, as responses often go off at a tangent and can unexpectedly come up with a real gold nugget.

    Rosie

  • Thanks Rosie - great stuff. Low FODMAP was recommended actually but I've really struggled to get my head round it - with 2 young kids I find it really hard to figure out how to change my diet so significantly. I'll maybe give it another go...

    Proctogram sounds interesting too...!

    Great to hear from someone who has come out the other side.

    Steve

  • Yes, the proctogram wasn't quite how I ever envisaged myself appearing 'live and on screen'! Never mind, it was the best procedure I've had in terms of diagnostics.

  • Thanks for the reply. Been like this for a couple of years. Can't recall the cost - £100 or something. Cut out gluten to start, then just wheat, along with taking the supplements. Did that for about 6 weeks and no difference.

  • Hi

    I have had symptoms which are very similar to yours for the last 11 months, with severe pain, normally in the evening , every day, so I can sympathise.

    I have had lots of tests, inc virtual colonoscopy and defecating proctogram, all normal. I have been referred to a specialist nurse who is trying to find a regime of laxatives which will allow a soft, complete bowel movement. Unfortunately it hasn't reduced the pain yet. Othe options I am considering are the low fodmap diet or amytriptilene.

  • I've just started on the FODMAP diet and I'm going to be very strict about it. Fingers crossed... Hope you find something that works for you.

  • Have you thought about having food intolerance testing? there are several you can find online. I used York test, which isn't cheap but it gives you quick answers. It was really easy to do. I would never have found out my intolerances without them. They give you telephone support too. I was intolerant to wheat (which I worked out myself) egg white, yeast, hazelnuts and dairy, I may have figured out one but all together much more tricky to work out on your own. Good luck, hope you find answers soon.

  • As long as I steer clear of most of my 'positive' foods I am ok. Egg is a definite no no, I have the occasional slice of bread as long as it's not white.

  • Do you have a link to that? xxxPandoraxxx

  • draxe.com/4-steps-to-heal-l...

    after my food intolerance test, i got a very good functional medicine practitioner who basically gave me certain supplements like digestive enzymes, l ~ glutamine etc to heal leaky gut

    do you have more serious illnesses or symptoms other than ibs

    alkaline diet 80/20 is good for most things

  • Thanks, yes just been diagnosed with Parkinsons which means I have to eat cleanly to keep as fit as I can

  • I've actually just had the first stage back from York test - a positive. Weighing up getting full test done (over £300) - not entirely sure because I've read really mixed opinions on food intolerance testing... Figure it might be a good starting point though?

  • I find vitamin D supplements help.

  • Thoroughly recommend Fodmaps works for me a treat. All info as supplied by your first respondent - get the app from Monash it's fantastic and very easy to follow. Good luck

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