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Serious IBS needs a new name!

I have found that when you tell anyone you have IBS they just assume you have the occasional stomach ache - they have no idea how serious it can be or how much it rules your life.

It affects me every day, pretty much all day, but if I mention it to friends they say something like "I`m sorry you`re having a bad day". I wish it was called a "disease" - I think it would then be taken more seriously. There are times when I have been tempted to lie and say I have Chrones Disease. People might then understand my need to be near to a loo and the fact that I feel unwell most of the time

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I know what you mean ! Sometimes the norm is a bad and a good day comes as a surprise.

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I agree with you, don’t think most people realise just how debilitating it can be, and how ill you can feel when it flares up☹️

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Yes I agree to. And it also causes people with ibs to not believe it and spend years pursuing other illnesses. I have a very nasty debilitating ibs. With nausia being the most troublesome symptom, it feels like I have food poisoning everyday.. But I'm sure there must be something else to. I know 2 people with chrons who bolth have a better quality of life than I as there is medication and understanding for that. Yet I only have ibs... Ibs is far to much of a generalized term.

You can make up your own fancy names for it. I always think calling it a chronic disenteric auto immune disorder sounds good.

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Ibs don't need any name. They should be telling people we have no idea or any tests available to tell you what you have wrong with you.

google.com/amp/s/www.expres...

Ibd is nothing like ibs at all.

People with 1 auto immune are likely to get more, auto immune means the body attacks itself.

Its a auto immune disease where appox 80% need surgery for Crohnes & 25% for uc. My parent was one of them, shes had 5 life saving ops for uc.

Rob.. did you have food poisoning before your sympoms came on. Have you been tested for ibd ?

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Yes I was suffering with chronic fatigue when I got a very nasty food poisoning. It actually nearly killed me. This was just over 3 years ago now. I had evey test under the sun. Did about 10 stool samples and loads of bloods, had scopes that were extremely painful. Just to get ibs as a diagnosis.

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Hey, do you suffer ibs - d ?

If so have you had the private blood test done for the toxins that some can have after having food poisoning ?

Now theres a test for it but no exact cure.. yet. But once one knows if they have them toxins, different types of meds can be tried out. i can pm you more info if you like.

What about C - diff tests ?

Have you had tests done privately ?

Digestive enzymes level ?

Parasites ?

Low stomach acid test ?

Food intolerance test ?

If not you could consider looking in to these.

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What caused your food poisoning ? if you don't mind me asking

I had green potatoe poisoning once😡

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I live in the UK and I don't know where you are from but our NHS is very poor. I believe I've had all the tests you have mentioned as I've been through 2 hospitals and 4 gastroenterologist, even sort out a professor at Manchester university. The compassion levels of the doctors and even a few surgeons I've had appointments with have been dire. I even had a surgeon at chesterfield hospital get up and walk out of the room as not even professionals take ibs seriously. So if I was to specifically request certain tests I get called a hypochondriac and told to stop googling symptoms online. The ONLY professional person I have spoke to with compassion was Professor Whorewell from Manchester university who listened to my story for a good hour, he checked over the tests I've had done and was happy to leave me untreated with a diagnosis of IBS and some antidepressants.

I got food poisoning from a restaurant near me and I am quite sure I got ill from a half corn on the cob. :(

Before this though I was off work (never to return) with fatigue. And was very tired, so even going out for that meal was a big thing. After getting poisoned I didn't have the strength to fight it. As professor whorewell said to me. The worst kinds of pi-ibs come from food poisoning while already being in a low place.

I wrote a post on this site all about my story with how I got Ill. Called "pi-ibs my story"

I get mixed ibs d and c and seam to have one of the most restricted diets I know off to :(

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I was under nhs for a total of 9 years with "chronic ibs" & other lables to.

Plus tmj, frozen shoulder, pains in knees, wrists, feet/toes, back, hands/fingers, bad swelling in hands/feet.

Iv had gps, dietitians etc laugh in my face in appointments & state there is no way i could suffer from certain symptoms that i said i did & to stop being silly...(yet at 1 point I actually had legal proof to what my body was doing)

They dismissed me from certain services because as i refused drugs & fodmaps diet made me seriously ill.

I lost 3 stone in a year a stone of that was in 1 week leaving me severely underweight.

I went private.

Unless one has pancreas problems nhs don't test for low digestive enzymes.

Nhs certainly don't test for food intolerances. I went private

Low stomach acid test can be done by nhs but they don't really offer many the tests etc

The toxin left after food poisoning is offered at 1 private clinic in London, not on nhs.

I found my answers when i went to someone who tested & treated root causes.

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Can I ask what clinic in London you went to for the tests please?

I myself have had lots of diagnoses, eds type 3, fibromyalgia, tmj, gallstones, ibs.

I am in constant pain, I cannot love like this. I get very bad pain every day. Some days I get bad cramps which causes me to faint. It’s horrible. I feel like no one knows what there talking about, I’m passed from pillow to post. I need to find out what’s wrong with me.

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Hey... that answer was for robwilde as in his said he suffers ibs - d.

The london clinic tests for toxins that some can have after suffering food poisoning.

I didn't have the exact same symptoms as him etc, so i didn't need the test for toxins myself.

My exact tests are not available now my practitioner has retired & only sees existing customers.

So what ibs symptoms do you suffer with ibs ? C ? D ? A ?

What level is your fibromyalgia at ?

Are you in a wheelchair or using a scooter ? Stair lift fitted ? Walking aids ?

How many painkillers you take daily ? For fibromyalgia ?

How bad is your tmj ?

Jaw lock ? One sided pain ? Both ?

Have they made you a mouth guard ?

Did injury/accident cause your tmj ?

Or it just appeared ?

How big are your gallstones ? How many you have ?

Are they wanting to remove your gall bladder🙈 ??

Have you ever had a full allergy test ? By nhs ?

A private food intolerance test done by a qualified practitioner ?

Low stomach acid test done by nhs ?

Full Vitamin deficiency tests ?

Or a magnesium deficiency test ?

Do you eat a sad diet, gluten ? Dairy ? Tea ? Coffee ? Pork ? Wheat ? Onion ? Tomatoes ? Eggs ? Unhealthy fats ?

I could help you with what tests you should demand from your gp if in england if you like ? You are entilted to them so should push for them. I see it as any tests they did the less i had to pay for privatel.

And depending where you live i could recommend private food intolerance test.

Also my mate has 10 diagnosed conditions from fibromyalgia ibs cfs and loads more and she has been on a anti inflammatory diet that after 5 days left her with no fibromyalgia pain at all.. she had bad fibromyalgia to as in 20plus painkillers a day still not touching her pain.

Its only my opinion but diagnosed conditions from nhs like ibs, fibromyalgia etc means the person needs to take care of their own root causes. Otherwise ibs symptoms opens them up to just about anything as when the digestive system is not functioning properly the rest of the body is at risk from anything.

Pm me answers if you wanna chat. You could just paste/copy this adding anwers on pm.

I know abit about ibs symptoms, tmj, fibromyalgia, gall stones, & what sort of practitioners to look forxx

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I know exactly what you mean I sometimes wish that my family could have the symptoms for a couple of hours just to see how I feel. Because I wouldn't wish ibs on my worst enemy everyday is different but on the whole I feel dreadful most days it would be wonderful to be " normal".

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Hi Janke,

I call it chronic IBS, but I think someone has had to lived it to appreciate just how awful it is:)

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I agree with you, its an awful condition and effects your whole life not just work(which is often the way employers view it). There are so many things I have missed out on because of my IBS and so many things I want to do but can't. I am at my wits end right now but people who dont have it will never fully comprehend how debiltating a condition it is.

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Totally agree IBS is a debilitating condition. Unless you have the condition people don't really understand how bad it is

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I tell people I suffer from IBS-D with bowel incontinence, that usually does the trick ;)

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Hi, I know exactly how you feel and I have indeed used Crohns as am too embarrassed to explain what IBS means, I definitely believe this condition needs a new name. I suffer this 'syndrome' with all its misery every day, for 6 years now, which brings on extreme fatigue, depression making life pretty miserable. Wishing you well.

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I completely agree w you too Synbad as I have been diagnosed with the most severe form (supposedly) of IBS -C from the Cleveland Clinic in Ohio 6 yrs ago. Lost 35 lbs in one year and was put on SSDI in 3 months I haven’t worked in 6yrs. It is completely debilitating to me I take Linzess 290 to have a bm everyday and the chronic fatigue and anxiety and depression and abdominal pain...it has taken away my QOL so much. I can’t work and it’s near impossible to gain the weight back. I saw dr Douglas Drossman in NC, USA. if anyone wants the best in USA. Hang in there everyone Ron

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I agree with Alison (from Sick of IBS). I used to say I have "IBS" but now everyone and his wife seems to have ibs, so I now say I have "Chronic IBS" which seems to make people think it's not trivial. But, at the end of the day, it doesn't matter what anyone else thinks, you know what you feel like and only you have to try and cope with it. Maureen.

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IBS is hard to treat because it's not a definitive diagnosis. A syndrome is just a fancy way of saying, "you have a bunch of correlating symptoms but we have no clue what the cause is we're just going to call it IBS so you know what to call it." Can't call it a disease since there isn't just one set cause of IBS. Everybody's IBS is different. It definitely sucks, and in my own experience no prescription medicine has given me any relief. Most have just made me feel worse. The only thing that gives me any peace of mind is Imodium. I'm actually planning to go to a holistic doctor/nutritionist soon because I've had my fill with regular doctors throwing pills at me that don't work. I'm hoping I can find a more natural way to alleviate my symptoms and perhaps help me beat this IBS once and for all. The best advice I can give to my fellow IBS sufferers is this: Be your own advocate. Keep researching, keep trying new diets and supplements, keep searching for the cause of your own issues. Don't give up and remember you aren't alone!

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Hi Merth, I have often wondered about an holistic doctor but not had much luck finding one. If you do find one please let us know how you get on. Maureen.

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i agree i have what the dr calls severe ibs with lymphocytic colitis . I know its not as bad as crohnes but we do have the exact same symptoms at least 90% of them .

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Me too janke!! Mine is more consipation!!

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Is there anything we can do to organise and advocate for better IBS medical research? I have felt exactly the same way as everyone here. What kind of syndrome can only be diagnosed by the absence of any other certain diagnosis? It also feels like IBS-D and IBS-C are very different and, while having some similarities in as much as the bowel is sensitive, may be two different disorders. Their treatments are mostly different. People do not understand IBS. Doctors do not understand IBS. People think it's a bit of discomfort here and there. The all-encompassing nature of IBS goes without acceptance until someone actually experiences it for themselves.

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I read an interview with Professor Peter Whorwell who is quite pessimistic about improvements in treatment as so few doctors are going into this. He thinks it can`t be cured but can be controlled and most doctors prefer to work in areas where they can cure a patient - rather than helping them to live better lives with the condition they have!

I don`t know if I agree that IBS-C and D are different disorders - many of us have a combination of the two with it varying from day to day or even during one day! Personally I find this the hardest thing to deal with as you don`t know if you should be trying to treat the diarrhoea element or the constipation (as you say, the treatments are very different!)

I do agree that more research is needed. I`ve been listening to some interesting radio programmes about the role bacteria plays in all aspects or our health - maybe this is the way forward.

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bbc.co.uk/programmes/b09zgy...

Link to the Radio 4 series ' The Second Genome'. There is good deal of research going on around the human microbiome, and some of the results are quite startling. Fascinating stuff.

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Sorry I didn't mean that IBS-C and IBS-D have to be different disorders. I was thinking more in how they're treated medically, that they seem to have such different treatments. I'm well aware (from my own experience too) that it's possible to move from one to the other, which is why the different treatment options can be frustrating.

There is indeed some great research on the microbiome coming out and has been for several years now. It just feels a bit far off in being properly funded and pursued by the medical establishment despite these leaps in knowledge. I hope that changes for all of us.

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Hey when you say..

Is there anything we can do to organise and advocate for better IBS medical research?

....No - as mainstream medicine only aims to mask symptoms with drugs etc - ibd is treated no different, arthrits, fibromyalgia, tmj, frozen shoulder, anxiety, depression etc the is long... take painkillers or anti depressants to mask symptoms and just leave people.

....Diabetes is one of a few where they actually give a person what their own body is actually missing.... why... because of death so they have no choice

I have felt exactly the same way as everyone here. What kind of syndrome can only be diagnosed by the absence of any other certain diagnosis?

....Fibromyalgia, anxiety, depression, none of these have tests available.

It also feels like IBS-D and IBS-C are very different and, while having some similarities in as much as the bowel is sensitive, may be two different disorders.

...Every single person will have different root causes for thier own symptom.

Their treatments are mostly different.

....Everyones healing plan will be different depending on their root cause.

People do not understand IBS. Doctors do not understand IBS.

...They are trainned to match a symptom with a drug.

...Not take out what our body doesn't want/need and put in what it does.

..For them to help anyone with digestive problems they would have to know about leaky gut, low digestive enzymes, all types of bacteria overgrowth, food intolerances etc... which they don't

Does not one here find it really weird that lactose intolerance is out there ? But no other d/e are ?

As in gps can diagnose it, shops get away with selling "lactose free milk"

So just normal milk with a lactase enzyme added.

Why are gps not calling this lactase enzyme deficiency ?

Why are they also not testing for protease deficiency & lipase deficiency & amylase deficiency & the rest ?

Its just all about sales💩

2018 yet they can't test for food intolerances either lol.

I really wouldn't hold out hope for them to help any one😔

Private is best, i really hope you find your answers one day.

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