Irritable Bowel Syndrome? Does it exist?

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Astra

Astra

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Ok Crohnies!

As you may or may not know, this dx irritates me! There has been quite a lot of posts about people being diagnosed as having IBS
My question is, were you dx with IBS? How long before they found Crohns or UC?
Does it exist? (my surgeon says no it doesn't) Your views please!
As Rob says - IBS? It's Bull Sh** :lol:
 
I agree Joan, I think IBS is BS (ha, didn't even intend that pun) to a certain degree, but I also realize that is a matter of opinion and there are many who will disagree. I was dx w/ IBS when I was a teen and when I tried to research it, I came to the conclusion that IBS is simply a diagnosis for someone who is experiencing digestive problems without any discernible cause. By definition, a syndrome is a collection of related symptoms. I do believe that your stress levels can affect your digestion (even in the absence of IBD) and this often can lead to these symptoms.
That said, what I don't understand is how someone can be diagnosed with both IBD and IBS. Clearly, if you have confirmed IBD then how can you be given a diagnosis of something that translates to symptoms with no discernible cause? Does that make sense? Again, just my opinion, because information regarding IBS is often vague and contradictory.

If anyone knows of a resource that gives good information on IBS, it would be wonderful if you could post a link. I think a lot of people here are confused by IBS.
 
Well said Shady!
excellent definition!

BTW (I've spelt irritable wrong!) ha ha
 
Ohhhhh yeah, I had the 'dx' of IBS for over 5 years until I had to go to the ER because I knew something else was wrong.

BTW, I was 'diagnosed' with IBS by a doctor who didn't even perform any sort of physical exam! What kind of (I)BS is that?!? I didn't know any better at the time, so I just followed his directions of taking Immodium and using a hemmorhoid cream for what turned out to be a fissure. I think IBS is just a general diagnosis, if the docs are too lazy to do tests, or can't come up with a definite conclusion from any tests.
 
Hi Ladies, I too am confused about whether the IBS is a legit condition, or if it is a more broad term such as dementia, adhd, or the latest trendy diagnosis Aspergers.
I have a diagnosis at this point of a functional disorder, which seems to the docs way of saying I have no !#$%$^% idea what is wrong with you. I had every test that Boston hospital had to offer and the only thing they ever found was a consistent elevated white cell count. Over 25k in testing and lots of humiliation and as Joan would likely say "Me arse still hurts!"

So, Joanie even if you are a Brad Pitt fan (gerbil boy) I can really empathize with your frustration over this IBS BS.
 
Ha Ha Jerry, I love you!

Don't get me started on the Aspergers thang!!! ARGH! That's all me arse too!

and Sharon
I hear ya sista!! Mwah!! xx
 
when I hung out in the newbie room for a bit I would tell people not to worry about about Diagnosis because it really does not count for much. Look at what the Crohns Dx is. They match your symptoms and damage up to a set of Criteria and there you go. It is the Montreal Classification they use now vs the Geneva classification used during previous decades. How is a Crohn's Dx any more substantial than IBD or IBS?

The pathology I studied in college stated that a "disease was anything that prevented you from reaching your genetic potential" So that included Abiotic as well as Biotic influences. In the beginning I was really hung up on finding out what was wrong and why but at this point I don't care what they call it this month. They don't know why any of us are sick and neither do we. We just know we have a collection of symptoms and all anyone can do is relieve them to make us feel better.

If I were to offer a concise statement to the question posed it would be:

Crohn's Disease is really a syndrome defined by a consistent set of symptoms with unknown causes.
 
I'm curious about this too, b/c I also read people's posts who said they had Crohn's and IBS and I don't get that. How do you decide what's coming from what?
Has anyone on here had symptoms of IBD, and ultimately NOT been found to have it, even if it took years? Or does testing usually produce a diagnosis? I mean they have to find something like scars on the inside to make a definite diagnosis, right?
I guess what I am wondering is if you have a proactive GI doc who is willing to do testing and not "settle" for IBS, is he likely to find something or not? If he doesn't find anything, then what else can he do but say you have IBS, i.e. unexplainable gut issues?
Is the issue here docs who won't do the tests for reasons of ego, or are people with IBS going through the battery of tests and their docs really aren't finding anything?
If my pill cam doesn't show anything in my small bowel, then I'm sure I'll get the IBS Dx.
Sorry for so many questions, but, Joan, I was totally wondering the same thing.
 
http://en.wikipedia.org/wiki/Irritable_bowel_syndrome

Ok, so if you had abdominal pains, bloat and gas etc, and according to this^ and you had a big poo, and the pains went away, then you've got IBS !? A functional disorder?


http://en.wikipedia.org/wiki/Inflammatory_bowel_disease
now lets compare the symptoms with IBD

Am I not seeing summit? Is there a difference? Irritated or Inflamed? That's the question!
So why don't the professionals out there decide once and for all and bin the IBS diagnosis and stick with the symptoms of IBD, scope everyone, stop wasting money, stop making everyone miserable, cos in the end, 9 times out of 10, it's an IBD anyway!!!???
 
I also think IBS is just an easy way of saying 'we don't know what is wrong with you and we can't be bothered to find out'. I was told initially I had IBS, until I ended up practically on my deathbed only a few months later and it was very apparent what was going on with me was not just a case of a dodgy stomach. If you don't immediately show all the 'classic' signs of Crohn's upon presenting to most doctors they just go by text book medicine and tell you it can't possibly be Crohn's, when it most likely is.

I've been lucky recently in that I've found a really good GI who has managed to get me onto the list of someone pretty high up at a larger specialist centre. My Crohn's case is pretty complex I must admit. They have great equipment though, can perform tests which other hospitals just don't have the means to do and are therefore much more successful in the diagnosis and treatment of Crohn's especially. I think if you end up going to a place like that with your symptoms you are far more likely to be accurately told what is causing said symptoms than be brushed off with a diagnosis of IBS. I went for an appointment there again today and the guy I saw was very knowledgable purely because he had a wealth of experience treating people who did have cases that were out of normal range and knew that everyone was very different in their illness and that it's not good enough to simply look for all the same signs in people.
 
NatalieMT said:
I also think IBS is just an easy way of saying 'we don't know what is wrong with you and we can't be bothered to find out'.
Click to expand...

Agreed. My 1st GI doc said "IBS", 2nd one said "probably Crohns", 3rd one initially said "probably Crohns", now on the most recent visit (when I told him the pred had provided little or no relief, beyond that explainable by the massive constipation) he's hedging to "IBS". I told him, "That basically means my stomach hurts, and you have no idea why, correct?" To which he replied "Yes".

Might as well have gone to a muffler shop...

IBS isn't my 1st "waste basket/get out of my practice" diagnosis. I've had "Fibromyalgia" since I was in my early 20's. Similarly, that term means "You basically hurt all over and generally feel like shit all the time, and I have no idea why. Now GO AWAY!".

Might as well have gone to the dry cleaners...
 
I have to say that I'm a bit skeptical about IBS too, having been told I had it and then finding the Crohn's. I had pain, bloating and constipation on and off for years but didn't lose any weight. It was the weight loss which made the docs think of IBD. As I understand it, IBS is a functional motility disorder rather than inflammation. But I've since read that IBD can present as constipation too. Something to do with the inflammation causing the bowel to swell and slowing peristalsis....So how can a doc know whether the poor function is caused by inflammation or dodgy autonomic nervous system, a metabolic disorder or what? The factors involved in bowel function seem to be extraordinarily complex and I don't think they know enough yet...
One thing I've noticed is that while I was on steroids the inflammation went and so did my symptoms of pain and discomfort. But the constipation stayed. But even though I was constipated, it caused me no pain or discomfort whatsoever so I wasn;t in the least bothered that I only went to the loo once a week. That to me suggests that inflammation causes the visceral hypersensitivity that the IBS diagnosis carries with it.
One thing I am sure about. Docs should take patients' symptoms more seriously and stop trying the psychological tack - yes, we all know that bowels can be affected by emotions but not to the extent that makes people desperately ill. I think a lot of docs like the label neurotic as it's better than admitting that they just don't know a lot of things.....

Good post Joan!

Gail
 
I actually read somewhere about a study that found that many people diagnosed with IBS had "clumped" blood vessels in their colons. And something about this mutated clumping may be causing the symptoms. That's really I all can remember reading. I will try to find that study and post it just in case anyone is interested.

Chris
 
Natalie - well said hunny! And doesn't it prove something? That we shouldn't take what a GP says as gospel, these people, God love em, are NOT specialists and should Not give people a false sense of security, people can DIE!!! Glad you've found a gastro that you love, I love mine too!

David! Sweetie!
I don't know wot a muffler shop is! But it sure sounds like a better choice than your quack! IBS? My arse!

Gail lovie!
Smashin science bit! Well said, and yes I'm sceptical too, can u tell?

Hey Chris, that sounds intriguing! hope you can find it!

Ok, you know wot we need here Crohnies? AWARENESS AND THEN SOME!!!
 
David! Sweetie! I don't know wot a muffler shop is! But it sure sounds like a better choice than your quack! IBS? My arse![/QUOTE said:
It's a garage that repairs automotive exhaust systems. The muffler is the last bit that actually does the muffling. I think across the pond you call them "Silencers".


Agreed about the I.B.ARSE Part!
Click to expand...
 
Yep, I'm in the camp that thinks IBS is code for "your digestive system is f-ed up but we can't pin a label on you."

The people I know with "IBS" are head cases and none of them eat properly. I honestly don't think any of them (the three I know) have Crohn's or Colitis -they just need to eat better and get on some head drugs.

But to think of all the poor souls out there that DO have CD or UC and are being waved off with an IBS dx!! It's tragic and dangerous!
 
ameslouise said:
Yep, I'm in the camp that thinks IBS is code for "your digestive system is f-ed up but we can't pin a label on you."

The people I know with "IBS" are head cases and none of them eat properly. I honestly don't think any of them (the three I know) have Crohn's or Colitis -they just need to eat better and get on some head drugs.

But to think of all the poor souls out there that DO have CD or UC and are being waved off with an IBS dx!! It's tragic and dangerous!
Click to expand...

Surely you don't mean to suggest that anyone who has the symptoms we're all so familiar with either has IBD or is a "head case"? Isn't that the same perspective we're all lamenting in the doctors?

Three is a pretty small sample size...
 
No, no no! That's not what I meant at all - I'm so sorry if it came across that way!! I know there are a lot of people who are misdiagnosed and labelled IBS b/c their doctors can't figure out or won't take the time to figure out that they have something else.

In the cases of the three people I know - they were also misdiagnosed, but in a different way.

I hope I didn't offend anyone. Sorry if I did. - Amy
 
My sister and I have had this conversation several times. Three doctors that I have discussed my case with have told me to recommend to her that she be tested for Crohn's. She has had a diagnosis of IBS for several years now. In her case, though, the symptoms are textbook IBS -- if there can be such a thing with a condition that affects people differently -- and almost nothing like Crohn's (example: she's never had anything resembling a flare, and she doesn't spend the day in the washroom).

I agree that too many people with Crohn's are diagnosed as IBS: I very nearly was, and it took dramatically worsening symptoms to get me tested for Crohn's. Many others here seem to have experienced same. IBS seems to be such an easy catch-all: hey, we don't need to give them more tests or drugs, just tell them not to be stressed and to eat better!

Re. the person who mentioned that sometimes the label of neurotic if applied when a difficult case isn't understood -- I totally agree with this statement. There are links between mind and body that remain poorly understood, and it's unwise to act too hastily in either direction -- saying something is purely due to psychological illness, or purely due to physical illness. Unfortunately, the one kernal of knowledge that sometimes stress can play a role in illness (many kinds of illness, not only stomach conditions), can lead medical professionals to ignore the very real physical consequences. Whether the cause is stress or a bacteria or something else, the physical symptoms need attention.

Enough ranting. I ate a handful of strawberries for supper and need to go suffer in silence. No stress here -- just red, juicy, beautiful berries that want to cause me pain. :)
 
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I had a friend at work who was told she had IBS and was treated with no success. Then they decided it was her gall bladder and took that out. Sounded crazy to me!
 
ameslouise said:
No, no no! That's not what I meant at all - I'm so sorry if it came across that way!! I know there are a lot of people who are misdiagnosed and labelled IBS b/c their doctors can't figure out or won't take the time to figure out that they have something else.

In the cases of the three people I know - they were also misdiagnosed, but in a different way.

I hope I didn't offend anyone. Sorry if I did. - Amy
Click to expand...

Amy - It's probably just me being frustrated over my continued inability to get a credible diagnosis, and the damned doctors casually vacillating back and forth like someone's life weren't hanging in the balance. What must it be like to have people pleading with you day in and day out for relief, and be able to do little or nothing meaningful to help them? HAS TO BE 1/3 to 1/2 of their patient load on any given day, if not more, wouldn't you guess? Well, apparently it's not disconcerting enough to make any of them charge less than $500-$600 for a hour of their time, is it?

Having a bad week, sorry if I overreacted.

David
 
My opinion is that IBS is actually IBD, but in the early stages. I think all the inflammation is present in IBS but until that inflammation persists long enough to create ulcers (as in UC) or strictures (as in Crohn's) there are no apparent signs for physicians to use to make an appropriate diagnosis. It really is a tragedy, however, b/c stopping these early stages of IBD (which are usually labeled "IBS") could have a tremendous benefit (basically reducing the inflammation before there is gross manifestation of disease). More research needs to be done to follow patients with the diagnosis IBS to determine how many of these develop IBD later on; of those patients with IBS that develop into IBD there should be unique biomarkers that could lead to earlier and better diagnosis.

Just my opinion.... :)
 
Hmmm interesting discussion....

For those of you that raised the point about some of us saying we have been diagnosed with both Crohns and IBS I have a few comments.

I thought I had IBS for years i.e something that caused me to run to the loo, have terrible bloating, wind and pain intermittently but never really thought it was any more than that.

It got to point one day where I realised I was on 60mg of pred - asthma flare - and running to the loo 14 times a day, absolutely exhausted and became a jibbering wreck because I was still holding down a full time job that was the work of 3 people - proven by them employing 3 when I left! LOL.

Went to GP who thought yer irish we think coeliac. Gastro also thought the same. Wasnt until I was just minutes away from my first colonoscopy and we were looking as some other test results my gastro said oooh I know where and what I am looking for now! Hey presto diagnosis of Crohns and confirmed with the biopsy results within 2wks.

Fast forward from xmas 06 to summer 07. I was admitted with a crohns flare, on iv steroids, and 2 different iv antibiotics. My blood tests showed flare too. However, 2wks later I was still running to the loo 7-9 times a day, loose or watery stool with normal blood tests.

They told me after a colonoscopy that my gut had major spasm during it, that there was no inflammation seen visibly and my biopsies showed no inflammation either. They came to the conclusion that I also had a "functional" problem i.e gut spasm etc with no crohns inflammation therefore they came to the conclusion it was severe IBS.

I find I get pain in different areas to where my crohns is confirmed - whether this is due to crohns being elsewhere - which is what my gastro nurses think and its pre it being confirmed/showing up as crohns.

So unlike most of you I didnt have the IBS "label" until after my crohns diagnosis... I was made to feel like it was all in my head and I was making a mountain out of a molehill and ended up really down.

Thats my tuppence worth....
 
I was the same. Dx with crohns since 1972. After seeing my consultant during my latest flare, in February, he was of the opinion that it was not a crohns flare this time, but IBS. He prescribed me anti-spasmodics which definitely helped the symptoms... which was good enough for me
 
Kenny - Thanks for your contribution and definition
Syndrome - a symptom or characteristic, or a set of symptoms or characteristics indicating the existence of a condition

Mayflower - Confusing isn't it?
Find something - IBD
don't find anything - IBS
But you've still got bad guts!

Amy - Yes it's tragic and dangerous alright!
And I was one of those people for 15 years!

Kelly - Just tell them not to get stressed and to eat better!
Ha Ha - Now that IS Bull Sh**
I was called neurotic for many years, this in itself is damaging, and whilst I was in physical pain, I was in mental torture!

Teeny - This is very familiar, pains in belly? must be IBS! Until one day something bursts! this happened to my friend too, she was told she had IBS, til her gall bladder burst open leaking into her abdomen, she nearly died of septicaemia and spent 2 weeks in the high dependency unit! Why didn't they just scan her!

Ashlee - YES!!!! IBS is IBD!! I agree with everything that you have said, thank you!

Jan - Thanks Jan for your contribution, like I mentioned, inflamed or irritated! So Crohns is an IBD because of the inflammation, but if the bowels are having spasms without inflammation, then they're irritated? so half of you is an IBD, and the other half is IBS!

Let's look at the whole picture
There should only be one condition, they should put them all under one umbrella, and decide once and for all, like a few years ago, when the experts decide to no longer call people with autism autistic, no-one refers to them as autistic anymore. They are people with an autistic spectrum disorder, on a scale or spectrum of functioning, ie high functioning people (Aspergers) would be at the top of the scale.
So, how about a Bowel spectrum disorder, put us on a scale of functioning!
ASD has eased many parents anxieties, their child with a disorder now fits onto the scale or spectrum, now let the professionals ease our anxieties, and scrap the dx of IBS!
Can IBS end up as an IBD? Well why don't they test earlier on, nip it in the bud, and end the misery of being dx as either mental or having a bowel that's irritated!
Er, why's it irritated tho?
Dunno!
 
Astra: 9 out of 10 with suspect IBS actually will have IBD? No way!!

The stats would be the exact opposite. In fact, only one out of 300 to 600 have IBD where as 10 out of 100 (or 40 out of 400) has IBS, in the United States. The number may actually be double this.

What do you mean by is IBS real? Millions of people (in the U.S.) have either diarrhea or constipation that can not be explained by an underlying disease
(Whipple's, cancer, colitis, Crohns, celiac, and the few dozen other diseases
that cause these symptoms.) Most of these people will never be eventually
diagnosed as IBD. IBD is extremely rare relative to IBS.

I do agree that it is strange that one can be diagnosed with both as the symptoms
are similar. If one has diarrhea and has Crohn's, isn't the inflammation causing
the diarrhea?
 
UAB girl: IBS diagnosis has been around for decades. It follows the ROME III
criteria. Statistics demonstrate that IBS is usually just IBS. Sometimes scoping
can miss IBD and the patient is diagnosed as IBS but in general most IBS
patients really just have IBS. As much as 1/3 to 1/2 of the patients seeing a GI
specialist are those who have IBS.
If these diseases started in the last few years, we would not be able to assess
that IBS cases will eventually be diagnosed as IBD but these diseases have been
around a long time. Millions, in fact tens of millions, in the U.S. alone have been
diagnosed for decades - according to your hypothesis, the prevalence of IBD,
Crohns, and colitis would be ridiculously high.

Estimated 30 to 55 million people have IBS (unsual amount of diarrha, constipation or alternating. About one million people have IBD. Surely you can't be suggesting that of the 30 million people with IBS, most of them actually have IBD?

Yes, people are misdiagnosed all the time due to physician error, missed by scoping, etc. but this is the exception rather
than the rule, especially in 2010.

Also, IBS is not associated with blood in the stool, anemia, osteopenia, osteoporosis, clubbing of the fingers, colon cancer, skin disorders,
eye disorders, weight loss, and loss of appetite.
 
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Jerman,

25K???!! Wow.

Did you do capsule endoscopy?
Quite a few Crohns patients were missed
by colonoscopy but found with capsule.
 
My IBS diagnosis quite literally nearly killed me. And I'm not saying that in any exagerration. Boy oh boy was the Emergency Room resident reprimanded! Hell, the nurse chewed him out verbably!

Flashback to January 1990. Friday night. After experiencing severe pain, I went on a Friday night to the local ER, explained my situation, and was sent along with an admonition that I was putting on a bit (in my weakened physical state, my screams of pain sounded fakish). Told to eat some fibre.

Saturday morning I have a bowl of flax hot cereal and all hell broke loose. Vomitting bile and fecal matter. Eye-gouging pain.

Went back to the hospital and with whatever last vestiges of self-confidence declared if they weren't going to admit me, then please show me where the morgue is because I could go lie down there and save them some time sending the meat wagon out to my place. Quite literally that was the state I was in, and I finally got a sympathetic admitting nurse who summoned a doctor who ran some midnight tests. Three hours later, I was on the operating table getting a double resection, appendectomy and gall bladder removal. Next morning was when I found out I had Crohn's Disease. Of course, I had never heard of it before.
 
Hi Journey

When I said 9 out of 10, I was speaking hyperthetically, I don't have any stats on it, it's just a saying, that we say round here!

I talk from my own personal experience, and saw a few GPs who would NOT refer me to a specialist, they blamed me, the patient, as being stressed with a poor diet, I was called depressed, which I ended up feeling anyway!
My point is to all this, is, if the GP had referred me to the gastro in the first place, as a process of elimination, I wouldn't have spent 15 miserable years throwing up, in agony, depressed, my marriage falling to bits, and with severe D, then I could've had appropriate meds, saved my marriage, been able to work, etc etc
I had 2 small kids, Uni, Mums ailing health, so I suppose I was stressed, yeah, but I had textbook symptoms of an IBD, and the quacks wouldn't have it. If I'd have been rich, I would've gone private. Over here, we've got to have a referral from a GP. I've found a link, a table of differences between the two.
http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

I was told I had IBS, BUT I had weight loss, eye irritations, loss of appetite, anemia, skin irritations, mouth ulcers and sometimes fever and vomiting
I just want GPs to have more awareness, and to do more referrals, thats all, and we pay our contributions to the NHS, that's not too much to ask, is it?
 
Goodness no. You had misdiagnosis which was actually medical malpractice.
In the states, this would have been worth a lot of compensation that you were
due.

In the U.S., anyone that has your symptoms would have been sent to a GI
specialist immediately and had colonoscopy, upper endoscopy, tons of blood
work, stool tests, and possibly some x-rays. Gastroenterologists get most of
their referrals from family physicians and ER visits. In the U.S., if someone
has your symptoms and does not refer to a GI or colorectal surgeon, and
the person actually had a disease, it is a clear case of malpractice. A lawsuit
would be resolved without going to court.

On the flip side, does medicine scope everyone with diarrhea and constipation?
Typically, you ask about abdominal pain, blood in stool and also do some
blood work and stool tests. If there is no anemia, no blood in stool, no
mucus, normal SED rate, then they may forego colonoscopy. But some people
on this board state there blood work was normal - although they did state
they had mor severe symptoms that tip off the doctor to IBD.

And also, just because there is misdiagnosis of IBD, that does not mean
IBS is not real or IBS is just IBD waiting to happen. It just means the
doc was an idiot for not seeing weight loss, eye issues, blood in stool
as IBD instead of iBS.
 
Hi journey

Looking back, I don't think my GP was an idiot, per se, just ignorant and unaware, and he was of the old school, and I think he hated women! lol
We have a massive compensation culture here too, and to be honest, I cba, he's probably dead now anyway!
I've read up on IBS on Crohns foundations here in the UK and Canada, and according to them, IBS DOES exist, but it's still put down to stress, lifestyle and diet, like peptic ulcers etc which I can understand, drink and eat shit, you're gonna feel like shit! But it's convincing the first port of call that you don't live that kind of lifestyle and that there is something not quite right!
I appreciate your feedback tho, thanks
 
I agree that telling someone that their gut problems are as a result of a poor lifestyle is wrong, yes for some people that might be the case but before I was diagnosed with Crohn's I was actually very healthy, now it's a totally different story! I wasn't anemic, didn't have low B12 etc (and I could still feel my toes!) but now I find myself in the opposite situation. Surely that flags up something, because these things change for a reason.

I think I mentioned to you Joan that I had an appointment at a specialist centre recently, it went really well for once. The consultant gave me an hour of his time, explained everything to me in a way that was understandable and has set about organising some more tests that I haven't had yet (MRI enteroclysis oh joy and a capsule) and would like me off the Entocort and onto the biologics no questions asked. *big thumbs up*
 
The thing that makes me skeptical about IBS is that I had symptoms of it for years but no weight loss. All the pain I had was in my colon. When I got Crohn's they did two colonoscopies and found zilch. The visible Crohn's was in my small bowel. Yet all through my flares the same symptoms in my colon continued. When I was prescribed Pred, the small bowel AND the colon symptoms all went away.
This makes me think that although there was no visible inflammation in my colon, there must be low grade inflammation there otherwise the Pred would have done nothing for my so-called IBS symptoms.
And some of the latest research into IBS suggests that low grade inflammation is involved in IBS. It is not detectable on ordinary biopsies but more detailed analysis is showing it up.
My thinking is that some people may have this low-grade inflammation all their lives and be diagnosed with IBS but it doesn't progress to more serious inflammation...whereas others may develop into something that is more easily recognised as IBD.
I just find it hard to believe in IBS because it just doesn't seem right that a bowel should malfunction for no clear reason....
And having been told to eat more fibre and relax, I think I just feel generally narked at some of the patronising docs....grrrrrrr......all those weeks I stuffed my face with bran until I scraped my guts to bits....
 
Hedge, again, a misdiagnosis does not mean it does not exist. While many stories exist of people who were suspected IBS or diagnosed IBS and eventually became IBD, there are millions of people who were diagnosed with IBS who will never get IBD.

Again, the stats don't lie. Only one million people have IBD. It is rare in the U.S. One out of 300 people. Compare this to HIV where 1 out of 200 people have it.
This includes people who are diagnosed AND people who are not diagnosed.

Most GI specialists and colorectal surgeons in the U.S. are very aware now
that many Crohns cases occur in the small bowel and that's why capsule
endoscopy and small bowel series are being utilized now.


Hedgehog, there is a clear reason for why most people with IBS have a
malfunction: stress. Stress is a tangible cause of disease the same
way tobacco is. Dozens of studies on IBS show that IBS sufferers
cite stress as a cause of their problems.

The number one cause of premature death in the UK, U.S., and Europe
is heart disease. Stress is a very significant cause of heart disease.
Stressful events can include death in family, divorce, illness in family
member, losing job, serving in war, being in an abusive relationship,
etc.
 
Natalie writes...

"I agree that telling someone that their gut problems are as a result of a poor lifestyle is wrong"

I think for IBD that is true as IBD onset occurs at age 15 to 25 with a huge
percentage of the cases being diagnosed by age 30. This disease is not
caused by mcdonalds eating, or lack of exercise, or obesity. It appears
it is a genetic autoimmune illness.

However, IBS appears to be due to stress. People can reduce their stress
levels by not being a workaholic or by not partying too hard.

Constipation is also a big problem and often this is caused by lack of fiber.
I am NOT talking about this symptom in the context of IBD.
I am talking about constipation caused by lack of fiber, which in the U.S
is MILLIONS of people. (There are other causes of constipation that
are not due to lifestyle.)

So in some cases, (not IBD) it is important to educate the patient
about lifestyle.

GERD, acid reflux, outside of a disease state, is mostly due to
poor eating habits.

Obviously a physician should only educate the patient once he/she
believes the diagnosing process is done and the disease is confirmed.
 
GERD actually isn't mostly caused by poor eating habits. I have GERD and it is caused by a loosening of the LES (lower esophageal sphincter). "This relaxation of the LES happens a few times each day in people without GERD. It's not known why it happens more frequently in GERD patients." I also have a hiatus hernia which also contributes to GERD. A lot of people are born with GERD and hiatus hernias.
I'm in agreement with others as far as IBS. I was told there are several types of IBD and is diagnosed on the types of cells that are infiltrating the intestines and when it is chronic inflammation, the normal tissue is replaced with scar-like tissue. I think IBS is part of this and like someone suggested - put it on a scale. I think it is lower on the scale... just not inflamed enough to change the cell structure.

I was also diagnosed with IBS and somehow this diagnosis was reached without any tests. I think by saying that it is eating habits blames it on the patients. I can't tell you how many times my mother was asked if she were a smoker because she had/and died of cancer by 52. She had never smoked. People, I find like to blame the "patient" when genetics play a large part in illnesses.
________
Matiz
 
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Re; Stress

There are millions of people who suffer from stress, and I don't think they ALL have IBS or IBD! I think stress is an over used word, like depressed, often used as 'oh i'm stressed' 'oh i'm depressed'
Real stress, and real depression are serious illnesses that require medical intervention. http://www.nhs.uk/conditions/stress/pages/introduction.aspx
We all live in stressful times, each and every one of us will go through a stressful event, but that doesn't mean to say we'll develop IBS or IBD, I know loads of people who have stressful jobs for instance and they don't suffer from any gut issues at all! I'm sorry but this stress thang doesn't wash with me!

And it was me Wendy that said there should be a scale of functional disorders,

Natalie! good outcome at the doctors, well done!
 
Astra:


Good observation. You are correct. There are millions of people who are stressed but do not have IBS. (Now they may have other issues such as psoriasis, ezcema, heart disease, sleep insomnia, etc.) They may not experience gut issues but they may wake up 5 times in the middle of the night. It's hard to find someone who has a stressful job and has no issue OR will not develop some issue in the future.
Our bodies were not meant to work 50, 60 hours a week - especially for those in low paying jobs with not much decision making. This is a rather new invention.

In regards to stress and disease, take tobacco for example. No one disputes it is a cause of lung cancer. But actually most people who smoke for 30 years will never get lung cancer. Even in China, where 50% of the men smoke tobacco, lung cancer is rare. But it is still a cause.

So, yes.....take one million people who are stressed out and some of them will have IBS. Take one million people who have no stress, and much less of them will have IBS.

There are scientific surveys published in medical journals that report as much as 65% of those afflicted with IBS had preceding diagnosed anxiety, depression, etc.

If you talk to IBSers, just interview a few dozen and what you begin to see is that almost everyone of them will say their issue gets worse when they are stressed or going through a tough time. (Similar to people with IBD, the flares get worse during stress.)

I'm interested in the people who report happiness, no stress, no problems but still have IBS and no IBD, no cancer, no Whipple's disease, no other disease. These cases seem to be rare but are fascinating because they prove stress is not the only cause of IBS.

It's known that IBS and even IBD are more common in countries farther away from the equator and in rural populations. Iniitially they thought this was genetics but now they realize while their may be a genetic predisposition, something in the environment is expressing the gene and allowing the disease to form.
 
Well, I am currently in the process of being diagnosed - in fact my capsule endoscopy is going on right now. So I'm assuming that whatever results I get from this test will mean I get diagnosed with IBS (saw nothing) or IBD (saw something). I would absolutely say I am not a "stressed" person. I am fairly laid back. No depression or anxiety disorders or anything like that. I am not saying that I don't have my moments - I do have a 4 and a 2 year old with whom I stay at home, but overall I do not let things get to me. Just not a high strung person and I never have been. And yes, overall I'm happy. I have a good marriage and life isn't rough at the moment, in spite of the economy. Would things get worse if that changed? Maybe. I dunno. But my point is, I feel stress in my case is negligible and I'm still having these stupid gut problems when I least expect them.
I will say this - when my gut symptoms got bad enough for me to notice I was pregnant with my second child, and I was also breastfeeding my oldest who was still nursing 5-6 times a day at the beginning of my pregnancy. I didn't wean her until I was in my 6th month. So my body was probably under a decent amount of stress, you know, with two little people syphoning off nutrients and what-not. Take that for what it's worth. Maybe that means nothing.
Anyway this is an interesting thread!!
 
I guess by now you gave back the computer thing and you just have to
wait to pass the capsule (usually within 24 hrs) and the results.
I think it is fascinating technology. Very cool your insurance covered
it as they have strict parameters when it can be done. One is a previous,
recent colonoscopy that showed nothing and then a whole slew
of symptoms.
 
I was 'diagnosed' with IBS at about 8 years old...because they tested for everything and couldn't find anything else. It makes me angry to think I've had CD for all those years, and nothing was ever done about it, medication wise. Maybe I wouldn't be as bad as I am now, if they had caught it earlier and done something more about it.

I have a friend who 'has' IBS, and complains about it ALL the time to me, and says 'Nobody knows how awful this is'...HELLO?? I don't know how awful this is, are you kidding me??
 
Daisy,

Sorry to hear that.

During those 8 years, did they do colonoscopy, capsule endoscopy, and small bowel series?

How did they eventually catch yours?
 
Totally empathise with you Daisy!
I think that too, maybe if they had've caught it earlier, I wouldn't be this bad now, all those years without meds!
And. Journey, obviously not! Like me, Daisy prob wasn't referred!
xx
 
I was diagnosed with IBS twice and told it was stress aswell, which I thought was really wierd because I was never a 'stressed' person.

So yeah also makes me wonder how many people are diagnosed with IBS who actually have 'something' else.
 
Asta, a lot of times colonoscopy does not
catch the Crohns so they label it IBS and
the patient suffers for years. Or like in your
case, they don't refer. Not referring is the most
outrageous.
 
I believe that IBS does exsit, my daughter and my sister have it, I have both crohns and later developed IBS, my GI explained that many moderate-severe with long flares (I've never been in remission) can develop IBS on top of their IBD and it's more common for those patients that have moderate-severe IBD and longer flares.

They are considered 2 seperate entities from one another. Both my daughter and sister have been extensively tested for IBD and all tests including colonosopies show no IBD, but their guts are definitely messed up.
 
Thanks for that, pb...very interesting. I especially found the last paragraph interesting. Even doctors can not agree whether it is possible for a person to have both IBD and IBS.
 
That is a very interesting article, and it's exactly what my GI told me - about the miscommunications b/t gut and brain, so I guess that means he's up on his research. I really hope that's what I have. If my capsule endoscopy ends up showing any kind of inflammation, I will be very surprised.
 
Hi and welcome to the forum Journey, I did have the pill cam and spent the whole day in boston wearing it for around 5 or 6 hours. I did indeed feel the pain while wearing it, and you push a button when you feel pain. they monitor it from the hosp.

You may want to plan on really baggy sweatshirt cause it sticks out like a flak jacket. or in this day and age, a bomb. I got some really odd looks but unfortunately no results. Good luck to you I hope it works out well for you.


Journey said:
Jerman,

25K???!! Wow.

Did you do capsule endoscopy?
Quite a few Crohns patients were missed
by colonoscopy but found with capsule.
Click to expand...
 
May 27, 2010

Astra:

Greetings. I am a new member (this is a GREAT community BTW) so let me introduce myself first so that you understand why your question causes such a Passionate response from me. I am 47 and have had Crohn’s Disease for approximately 25 years. I’ve been hospitalized over 100 times; had 10-15 Major surgeries; experienced every conceivable known side effect; and taken most of the drugs developed for the Disease. I even wrote a critically-acclaimed Book about I Cope with Crohn’s Disease through Humor and the incredible support of my Friends and even got on “The Today Show” with it and I’ve been told it is quite Funny and VERY helpful to Patients and their Families. So, I just want to point out that I have dedicated a great amount of thought to the EXCELLENT question you pose in your Post.

Quick Background: Prior to Posting a 10-Minute You Tube Video last week entitled, "Clarifying Confusion, Crohn's Disease, Ulcerative Colitis, IBD and IBS” (Whoever Administers this great Board does not let me post Links/URLs until I post 15 messages but just today I posted 5 or 6 very thoughtful responses trying to give people the benefit of my experience so hopefully they will soon take that restriction off of my account) I asked a world-renowned Gastroenterologist to identify the differences between IBD and IBS and why these extremely serious Disease don’t have their own “Branding” instead of being hidden under the umbrella term of IBD? He did not get into the Branding/Fund-raising Politics with me (See, I said he was SMART) but he did say some of what follows (I added the Health Insurance Company stuff):

IBS – Irritable Bowel Syndrome is a “Disorder of Function” – essentially a Health Care Insurance invented umbrella term for Doctors to use for Billing Codes when someone has a legitimate Bowel/Intestinal problem but does not test positive for Crohn’s or Colitis. A Spastic Colon would be a good example of IBS. So, it DOES EXIST.

IBD – Inflammatory Bowel Disease – is MUCH MORE SERIOUS and it hinges on the word “Inflammatory” since it is an Umbrella Term for Diseases in which the Digestive Tract (and in some cases other areas of the body) are INFLAMED. Having said that, the Two (2) Diseases that fall into this Classification are Crohn’s Disease and Ulcerative Colitis (or Colitis – if that is even different from UC).

I embarked upon this Geraldo Rivera-style Investigative Reporting because I saw how “successful” “World IBD Day” was last week in 27 countries on Four (4) Continents – but yet – if I polled 100 people in Los Angeles, California they would have no accurate idea about Crohn’s Disease or Ulcerative Colitis or about their devastating effects on people’s lives and they would not be aware of the incredibly brave people who must deal with some embarrassingly unique challenges every day. Thus, I personally believe that the IBD Umbrella Term actually defeats the “Raise Awareness” Goal it was intended to accomplish. Others disagree and claim that Cancer is a “Catch-all” for Breast Cancer, Colon Cancer, Lung Cancer, etc, - but - as we all know – these individual Cancers are extremely well-“marketed” and CLEARLY stand on their own. Accordingly, Crohn’s Disease and Ulcerative Colitis should be afforded the same respect – AND it would actually be more effective in terms of Raising Awareness and Research Money.

I hope you can click through to the Video I did because I have been told that it explains the above quite simply and succinctly. Again, it is called "Clarifying Confusion, Crohn's Disease, Ulcerative Colitis, IBD and IBS" (and don’t be put off by the 31 views because so many people initially watched it that I accidentally deleted ALL of the Videos I had posted in my attempts to make some changes and I had to go back and post them all again.)

Please feel free to contact me with ANY comments. Thanks.
 
Ibs may be real or not no one can provide 100% accurate proof either way

why I say ibs is bs is because it is a bs excuse used by many drs to palm off a patient that's in a too hard to diagnose basket

tell them it's ibs an they leave you alone cos they got a dx

Ibs may or may not be real etc I'm not concerend with it either way to argue, what I don't like is how many ppl are put into the ibs basket only to find in yrs to come it wasn't ibs but actually crohns or uc etc
 
I think Irritable Bowel Syndrome is a genuine condition in and of itself. It's widespread.

Being misdiagnosed with it shouldn't detract from the fact others legitimately suffer from it.

In no way should we discount the suffering of those with IBS.
 
well i had colonoscopy 7 years ago. Internals all in excellent condition. They were searching to see if i had celioac. Nothing found. but told i had ibs. 7 years later another colonoscopy and inflammation found and told i had crohn's. So on pentasa now feel heaps better.
 
It possibly is a diseaes I dunno I'm no dr

problem is it's a wide coverage of symptoms, so a dr that can't be bothered looking anymore or doesn't really know just lump ppl with the dx of ibs

gives them some info an some Meds an sends them on there way

unfortunatly for some like yourself johnny that can be dangerous

so what I'm saying is
if I was dx with ibs I'd think bs and get another opinion or two

it may well be ibs or ibd or what ever but because ibs covers such a large number of problems I don't think it's specific enough a dx for most ppl
 
If I took my first dip sh@t drs dx as gospil then I'd stil be thinkin I've had the worst run of luck an keep getting gastro

I mean he dx with gastro atleast 6 times in 3 months said rest n lots of fluids
that was it
went to another dr and straight away I had rests of all diff descriptions b4 bein refurd to a specialist
a endoscopy and colonoscopy later and I was dx with crohns
yea gastro more butt!!
 
My first visit to GP after I first got symptoms 17 years ago and he said IBS and told me to reduce stress. I had the worst flare so far this past March and just got the CD diagnosis. For years I thought my pains were from my colon getting out of sync because somewhere a doctor said, rather than a snake like squeeze to move food along, you get a squeeze in two places and in between your colon blows up like a balloon. I had that picture in my head for years and now who knows...maybe that was never happening.
 
These guys in Cleveland have a pretty good handle on IBD and IBS. Even my primary care doctor knows the difference. I've been told they're two seperate conditions which could exist at the same time. My GI believes I have both Crohn's Disease and IBS.

When I had the first colonoscopy, it indicated ulceration and inflammation in the ileim. I was in between GI's, so I went to my primary care doctor. He said specifically that I had "some kind of inflammation going on in there". I said well if I have inflammation in my intestine, does that rule out IBS. He said "Exactly. IBS is not caused by inflammation. IBS is a condition caused by spasms usually in the colon. You have inflammation which means you probably have some kind of Inflammatory Bowel Disease, but I can't say if it's Crohn's. I can't rule it out either. You need to get to the GI for that."

So they're able to tell the difference, at least up here Cleveland. My GI has told me repeatedly that I have spasms in my lower bowel - it spasms even when it's touched or pressed. That's why he thinks I have IBS and Crohn's. Crohn's showed up in my bloodwork, the colonoscopy, and in the pathology (biopsies). My GI thinks my pain and cramping is more intense than it would be with the degree of Crohns which he diagnoses as "mild". But he also clearly indicated there was flaring going on. Flaring being active inflammation.

So from the way it looks to me, IBS is a specific diagnosis that involves lower bowel symptoms. I'm not really in disagreement with that because I have a LOT of pain and activity in my lower bowel, while my version of CD is "Crohn's Ileitis". So Crohns is in my small bowel and contributes to lower bowel malfunction, but I also have an overly active lower bowel that spasms all the time. Well now I have that colon dysplasia in the lower bowel too, which is also not directly related to Crohn's or IBS.

The problem I have with IBS is nothing seems to be able to calm the spasms. I mean today I'm still cramping for no good reason. I'm not having other Crohn's flare symptoms like joint pain (my knee is the smallest it's been in a long time), lower back pain, flank pain, and I'm not fatigued either. I just have these damn cramps right above the pubic bone that never seem to go away - not as bad today - but there in the background. They're there when I eat, they're there when I wake up and don't eat. And yes I'm pretty stressed right now, too.
 
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Hedgehog said:
I think a lot of docs like the label neurotic as it's better than admitting that they just don't know a lot of things.....
Click to expand...

You read my mind, Gail!

Oh this is so true...and the stupid flustered look on their faces when you yell at them because YET AGAIN someone is sending you home without a diagnosis...it makes me want to knock them out! ARRRGHHH...getting frustrated just talking about it!

IBS is BS and just a go-to-when-i'm-too-lazy-to-look-into-this-right-now...

Cheers to all the doctors who are doctors for the right reasons...and go into the calling because they actually CARE about people.

I'm done venting (for now)...

Kari xx
 
Hiya Michael

eventually found the youtube video, unfortunately it went off half way thro! but I got the gist of what you were trying to say, very informative. Thank you
I will try again tomorrow, I would like to read the comments too, but I think they have been deleted?
xx
 
VERY interesting May!
think someone mentioned about IBS being a precursor to IBD?
mmmm something to think about
and MAP has been mentioned on the forum too
if what they say is true, and eradicate the MAP, is this the cure for Crohns?
nipping it in the bud before it develops?
 
think someone mentioned about IBS being a precursor to IBD?
Click to expand...


Yeah, someone did. That's the first thing I thought of when I read it.

Kindof makes you think, though, the way a lot of those IBSers suffer that something more than miscommunications b/t brain and gut is going on.

Gotta love gut issues.
 
on the original question, yes i believe IBS does exist. i've posted elsewhere on the forum about my mum suffering from such severe IBS in the past that i thought we were losing her - thankfully she's learned to pretty much control it with a strict diet and eating regime.

some unfortunate sufferers have IBS alongside other health issues, and sometimes they can be UC or Crohn's, which makes double trouble in the digestive area. but just as easily, someone can have IBS alongside anything else..

i do believe that stress is a factor in IBS flare-ups, and it's true that not every stressed person will get IBS - some people get panic attacks, or palpitations, or headaches - it's just the way their body reacts to stresses. in my mum's case, her stress is more anxiety related, and most definitely when she's anxious, worried, upset - her IBS is sure to flare up a few days later. she's been checked out for other stomach causes of her symptoms - nothing showed up.

interestingly, i also get IBS-type cramps and symptoms from time to time, and i have no colon left - so i reckon the dysfunction of the peristaltic action can also affect the small intestine.

i think a lot of the disbelief about IBS being a genuine condition comes from histories of misdiagnosis - doctors saying a patient who presents with pain/distention/constipation etc has IBS, without checking further.... and in time that patient proves to have UC or Crohn's - but that doesn't detract from the fact that IBS does exist.
 
Yes, this is true, I think maybe we have come to the conclusion that IBS does exist, and I think that what is needed is more awareness of IBS/IBD with general practitioners, and maybe more referrals, this in turn would put an end to misdiagnosis, but on the flip side, will they just scope everyone who comes into the clinic/health centre with belly ache?
Prolonged inflammation causes scar tissue, this causes strictures, this causes narrowing and so on, so would early intervention with a diagnostic tool, stop IBD in it's tracks?
it's debatable.
 
Hi I was diagnosed with ibs in 2006 after 9 years of symptoms but then diagnosed crohns after requesting to see a gi in 2009
 
but on the flip side, will they just scope everyone who comes into the clinic/health centre with belly ache?
Click to expand...

That seems to be my GI's MO. I guess that's how it is though, b/c he told me IBS is a diagnosis of exclusion. Best way to rule other things out is to stick cameras up butts, right?:tongue:
 
i think a lot of the disbelief about IBS being a genuine condition comes from histories of misdiagnosis - doctors saying a patient who presents with pain/distention/constipation etc has IBS, without checking further.... and in time that patient proves to have UC or Crohn's - but that doesn't detract from the fact that IBS does exist.
Click to expand...

I think this is a very good point.
 

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