Just an observation: I have had IBS for over 2... - IBS Network

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Just an observation

Helen37 profile image
10 Replies

I have had IBS for over 20 years now. As other sufferers have commented, not one person in the medical profession , in all that time, mentioned the possibility that IBS could be the problem. I now believe that this is because symptoms and treatment are so difficult and so complex, that your average GP does not wish to acknowledge the disease, let alone prescribe medication.

I was speaking to a friend's daughter who had been in the nursing profession for quite some years. A passionate and dedicated nurse, she told me that she felt strongly that if this extremely debilitating and often unbearably painful disease occurred mainly in the male species, rather than the the other way around, there would have been significant

research taken place a long time ago. However, it being more commonly known as a 'female ailment', women are still being told "it's all in your mind" , and brought about by hysterics. It is true that stress is a factor, but it is not the cause. All severe symptoms cause stress. I hope that perhaps the tide is turning but slowly. Monash university, Australia, have done considerable research and produced a successful inroads with regards to diet. Grateful thanks to them. It is a work in progress and so far has helped so many desperate people. For all our sakes, and for our families and friends who are deeply affected also, I hope and pray for this. May we all see at last, a light at the end of the tunnel. May the new year be a better one for you all.

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Helen37 profile image
Helen37
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10 Replies

IBS is onky diagnosed when other causes like diverticulitis, Crohns have been ruled out

These can only be diagnosed with a gastroscopy and an endoscopy

gfmum1 profile image
gfmum1

Sorry to disagree, but my experience is the exact opposite. At my very first consultation about my digestive issues many years ago, a GP declared that it was IBS, without any tests & despite my insistence that stress has no impact on my digestive problems at all.

Since then, the "label" of IBS has stuck & many GPs will not look beyond that, they're simply too busy & overworked. I have had several prescriptions foisted on me over the years because the GP has been running late and they've prescribed this particular drug for "IBS" before.

Like xxxPandoraxxx my symptoms are related to food intolerance so here I am in complete agreement with you regarding the work done at Monash.

Myrtle81 profile image
Myrtle81

I agree. Ibs is a result of another root cause, it is a by product of something else, that is why it is near impossible to treat, if you are treating a symptom with drugs etc, and not looking at the root cause, say stress and anexiety, you won't fix the problem. More people will need to look inwards and see if thay can see the root cause.

Pandora, are you symptom free now?

Will1234 profile image
Will1234

Hi,

Having read the posts re food intolerances , I think , certainly in my case ,food is the problem. I have suffered, ( not as extremely as many who describe their symptoms on these posts), since age 21, now 69 and still wonder what causes it .

Some foods I do know to stay away from but other times an attack often post meal comes about with a meal which has not appeared to be problematic in the past.

It does almost always feel like my system wants to reject something and sometimes, I can even tell it will occur, following a few mouthfuls.

I have been thinking lately about getting some testing done to find out if and if so, which foods I cannot tolerate. Question is what test, where do you get accurate testing done. There are companies advertising on line. One involves sending a hair sample away for DNA testing.

I raised this question before but no one commented. I assume someone out there has tried some forms of food intolerance testing and either found something that worked and was accurate or alternatively found it was inaccurate or did not help.

Hope someone can provide information. It would be great to go out for a meal and not feel panic waiting for dose to strike. It is like - I only enjoy anything when it is almost over and I have made it without a problem. Never look forward or want to commit to going out as it can be very stressful . As others don't really understand ,you feel like an alien .

All the best for 2016 , to all out there.

Will1234

wiserlady profile image
wiserlady in reply to Will1234

If food intolerance is the problem surely you can sort this yourself, by trying different foods one by one and elimination. You can do that alone, you do it at home, no doctor can do it for you. The best you can get from a doctor is them supervising it, which is not necessary.

Helen37 profile image
Helen37

Hello Will1234

I cannot claim to know much about where to try and find accurate testing for food intolerances. I have heard that tests can be costly and results questionable. Probably this is why you got no response on that subject. Years ago I tried the YORK test. You have to send a blood sample which apparently is tested for a long list of suspect foods. I told my doc at the time. He laughed and said 'You should have saved your money'. In this instance he was right. I am certain that I am not alone when I say that throughout 20 yrs of this most debilitating disease I have spent a fortune on trying everything and anything in the hope of finding a 'miracle cure'. Two years ago I had a colonoscopy and endoscopic test in order to rule out other possible causes. I was then sent to a dietician who asked me if I would try the FODMAP diet. This advises to cut out certain foods from your diet and then re-introduce each one at a time ,keeping a record as you go of symptoms . I agreed to try it.but was very scepticle . After three weeks I began to have pain free days but put it down to coincidence. After six weeks I was amazed as to how much better I was. It is not a 'miracle cure' and I still need medication. At my worst, I was being taken in to A & E two or three times a week and given morphine injections. This doesn't happen any more. It does not help everyone. It was new to this country at the time but had 75% success rate in Australia where it originated. In your case I would say that you need to undergo the tests I mentioned to rule out other possibilities before giving this a go, but there is nothing to stop you investigating it now. There is now plenty of information on websites. Probably best to go direct to the Monash University website as FODMAP was compiled there. I don't however, in the long term think you should go it alone. There are private dieticians now a-plenty, but as I said, NHS now have dieticians especially trained to treat patients embarking on this venture. (No doubt long waiting list applies). Worth a try don't you think? In any case, I wish you well.

Will1234 profile image
Will1234

Hi xxxPandoraXXX,

Thanks for the info . I will look into this Vega testing locally. Having suffered this for about 48 years and tried all sorts of things , it seems late in the day to be still searching for an answer.

Having said that, I have never tried a food intolerance test, other than a blood test for lactose and one for something else , probablya celiac test.

Thanks again for all the info, I will check this out after New Year celebrations over.

Hi IBS isnt a disease.I think so much ubs us caused by stress and processed. Foods.hard to deal with.we all seem to be individual in our symptoms and causes.at least there are lots of things tibtry and its not a killer.fodmap seems to work for a lot of people.often IBS is accompanied with other health issues physical n emotional.doctors don't have a cure can only eliminate other health problems. Diet exercise and dealing with emotional issues seem the only way forward.I'm finding after many years of suffering that blow fibre,mebeverine,buscopan an imodium are my helpers.heat helps with spasms n bloating.imodium if d. Walking an ginger wine helped over Christmas. Sultanas over holiday triggered IBS but at least I enjoyed the cchristmas cake n pudding! Hope you fund away ahead in 2016.

Gff

helen37: well said. you feel like you are 'bothering' your doctor with your 'complaints' which are NOT in ones head (its in our guts)!!! buscapan, for me, seems to help but it can (and does) cause diarhea!!!! Nice, huh/ it is rather a debillitating disease and one I would not wish on my enemy! it IS time the medical profession acknowledged this horrible aillment! we should ALL start bringing pressure to beare about this IBS, don't you think???

Helen37 profile image
Helen37 in reply to

Hi Scoobiedo,

I think perhaps the tide is slowly turning, with 'slow' being the operative word.

When I first started the FODMAP diet, I was lucky enough to see a dietician who was newly trained in in this particular diet, and I was told I was the first

Patient in Brighton to give it a go. At that time, the hospital consultant had not heard of it, and I had to take the books I was given on the subject which I allowed him to borrow!! Since then after much debate, the NHS are now training their dietician and so far they have had a 75% success rate (doesn't suit all), but surely worth trying, It contradicts almost all of the contents of

The original diet sheet being handed out to IBS patients. A lot more medication available now too, although as we all know, it is very much trial and error. A few years ago I was so ill that I was being carted off in an ambulance to A & E , which in itself was a horrifying experience, where I was given morphine injections, and sent home next day,, only for the whole ghastly experience to be repeated within a few days.- no compassion or sympathy, but oh I was so grateful for the morphine. I now have my food intolerances pretty much sorted out. Only the occasional flare up now and then, but no nocturnal dashes to A & E. I had suffered with IBS for over 20 years, before finally getting a oolonoscopy an endoscopy to rule out other possibilities. Up until then no diagnosis or help of any kind had been offered. I know the diet can seem restrictive, especially when eating out, but compared to a living hell, infinitely preferable. So big thanks to Monash University , Australia for their painstaking research which is still a work in progress. So as I said, I like to think the tide is turning, but there is a long way to go, as we can see when we read the correspondence in "Health Unlocked".

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