Why IBS Does Not Exist :shock:

[tex]

Since IBS keeps coming up, I thought that I should clarify my position on this concept. Now, I'll grant you that while this is mostly a tongue-in-cheek discussion, I have a very strong suspicion that the basic premise that I've outlined here, is pretty close to reality, if the truth were to be known.

Technically, IBS does not exist. If you analyze it logically, that becomes clear. How could it exist, with no way to diagnose it? When a doctor can't find some other legitimate disease to blame a patient's symptoms on, they arbitrarily call it IBS. Why? Because GI docs got tired of telling patients that they didn't have the foggiest idea what was causing their symptoms. It's embarrassing for a doctor to admit something like that, especially if that doctor has an ego as big as the average GI doc. Rather than to continue to swallow their pride, and admit that they are not living up to the terms of the certificate that they have hanging on the wall, that proclaims them to be an "expert" on digestive system issues, one day, one of them came up with the brilliant idea of giving a name to that non-existent disease, so that they would no longer have to appear clueless, when they couldn't figure out what was wrong with a patient.

It didn't take the rest of the gang long to jump on that concept, like a chicken on a June bug. You don't argue, when salvation is staring you in the face - you grab it and run with it. For anyone who doubts this scenario, can you name one other disease that was "created" out of expediency, simply because no other diagnosis fits, (and no, idiopathic "anything", does not count. ). IBS exists simply to salve the ego of GI docs, and to give their undiagnosed patients, a sense of closure, (albeit, a false sense of closure). The fabrication has been around long enough now, that some of them are actually beginning to believe that it is a real disease, and there are recommendations for treating it, etc.

IOW, the concept of "creating" a disease, simply by describing it as "what's left when all other diagnoses have been ruled out", wouldn't fly in any other scientific discipline, so why should it be allowed in medicine? For one thing, ruling out all other diseases is a rather whimsical approach, and virtually no GI doc actually does that - most of them rule out a few of the "easy to diagnose" diseases, and don't go any further - they don't even bother to follow the rules of their own fictitious "game". Of course, in the final analysis, it is their game, so I suppose they can change the rules as they see fit.

OK, I'm not saying that there's not a possibility that such a disease as "IBS" could exist, I'm just saying that the disease that they have chosen to fabricate, will not withstand the test of scientific logic, so by that standard, "IBS" does not exist. Look at it this way: If they're gonna start making up diseases to fill "empty slots" between diagnostic procedures, why assume that one disease fits all? For all they know, there might be a dozen diseases with those symptoms, that don't fit any other diagnostic criteria.

Tex

[Syl]

Hmmmm. My idea of irritable bowel syndrom goes something like this, based upon my own personal experience, over many years; I am currently 70 years old. I think it describes the mind/body connection whereby when faced with a nerve-wracking situation (definitely subjective) the gut reacts by spasming and causing you to rush to the bathroom with immediate BM, cramps, etc. I used to get this all the time, from childhood on. Always when I had to face some social situation. Once I had to babysit for my sister while she was in the hospital having a baby. I was supposed to help her husband with the four young children they had at home. No problem. I get there, and am faced with a sick guy whose tonsils swelled up so he could not even swallow and had to go to the ER immediately and was hospitalized, leaving me with the four tiny rather wild children to care for for several days! Believe me, my bowel went into an immediate spasm, ran to the bathroom and thought I would live there forever. Called my husband from neighboring state to come help me and when he got there, everything calmed down. Crisis over. Just one example. I have always had some form of agoraphobia (fear of leaving home, social situations, etc) making presentations, company coming to stay a few days, malls, any kind of social challenge. Some people get headaches, sweaty hands, run to the bathroom and the lucky ones don't. This "perceived fear" is highly subjective, and what bothers one may not bother another, but in my world it could be called IBS. Doctors used to tell me at different times in my life, that it "mucous colitis, spastic colon (sounds about right to me) and lastly, yet another new title: IBS. I was biopsy diagnosed with LC twice in the past several years, but I believe you can certainly have a highly nervous colon, as well, in addition. Any time I have had bad spells with the colon, it has always been started by some "nerve wracking" event. Not a food. The longer the "crisis" situation lasted, the longer the D symptoms lasted. Some things you can't bail out of for a long time, so you suffer longer. Funny thing my mom used to say "It's not what you're eating; it's what's eating you". She was made of the same stuff as me and didn't do well facing the public. Not that we can't...it's just that it's hard for us...we have to push ourselves, because our fear goes right to the bowel. So yes, I think IBS describes it pretty well IMHO Sylvia

[Polly]

Interesting philosophical discussion, Tex! You always get me thinking.

I think a key distinction here may be the word "syndrome" (irritable bowel syndrome) as opposed to the word "disease" (inflammatory bowel disease).

A syndrome is a collection of signs and symptoms that occur together and are characteristic of a condition or disorder, although the reason (cause) that they occur together is often unknown. In a disease, there is more often than not some clue as to the cause of the symptoms/signs. So, use of the word syndrome rather than the word disease means that it is a "wastebasket" diagnosis, one by exclusion usually.

In peds if we rule out everything we can and still don't find a cause for a fever (for example), our diagnosis would be "FUO" or "fever of unknown origin". Maybe that's what we should call IBS..........irritable bowel of unknown origin (assuming all known causes have been ruled out).

Thanks for making me think!

Love,

Polly

[Rosie]

Polly wrote:

Maybe that's what we should call IBS..........irritable bowel of unknown origin

Or, Irritable BUNKO

Rosie

[tex]

Polly,

You're right, of course - that is a key distinction. Possibly one reason why I overlooked the "syndrome" aspect of it, is because the term IBS is used as an umbrella term, whether the symptoms include D-predominance, or C-predominance, which are two radically different symptoms, to say the least. That seems to me to kind of stretch the definition of a syndrome.

I like your suggestion a lot. IBUO seems a much better term than IBS, because for one thing, it freely allows for all the variations that appear, (such as D-predominance, or C-predominance, for example). It also neatly sidesteps the question about whether more than one disease/syndrome might be involved. Yep, I like that name, Irritable Bowel of Unknown Origin, (IBUO).

Love,
Tex

[Gabes-Apg]

now that does sound like a character from the harry potter series.............

[tex]

Rosie,

You may have a contender there, too - that name has a nice ring to it.

Tex

[Bifcus16]

Tex asked:

For anyone who doubts this scenario, can you name one other disease that was "created" out of expediency, simply because no other diagnosis fits,

I can think of a few.
My favourite is "Monoclonnal Gammopathy of Undetermined Significance" or MGUS. It is Undetermined Significance because, well...., they don't know what it signifies. Depending on the symptoms it causes, it gets relabeled Multiple Myeloma, Waldenstrom's Macroglobulanemia, Chronic Lymphocytic Leukemia or a few other similarly long winded titles. In fact, a key part of the formal diagnosis criteria is that it doesn't qualify for one of the other labels.

The way medical conditions is named is intriguing. For example, 'itis' on the end of something simply means inflammation. So gastritis is gastric inflammation etc. It doesn't mean the docs have a clue what causes it, or any grand cure. It is simply a descriptive title.

IBS could just as easily be called 'intestinitis'. What is annoying is that so many medical folk are happy to accept the catch all diagnoses without making all reasonable attempts to get a differentiated diagnosis. But then, they aren't the ones spending all day on the potty, so why would they care?

What the doctors should be doing is making sure they run every possible test -repeatedly if necessary- to get a differentiated Dx and then, provide a differentiated Rx. But look at it from their perspective - they can provide one of half a dozen different drugs or do a bowel section. Not much else they can do other than that. So why not just work through the list of drugs and save everyone money.... Now, if they were trained to know that if it is diagnosed as MC you need to prescribe this diet, then we would see a different result.

I think IBS does exist - but there are just too many people diagnosed with it who should be followed up and diagnosed with something more detailed.

I'll climb back off my soapbox now...

Lyn

[Gabes-Apg]

i like your thinking lyn - (and you weren't on a soap box)

the health system does not assist the specialists in doing thorough investigation (and supporting patients whilst they are going through that investigation)

have the miscellanous category such as IBS gives means to make the patient feel like that have a diganosis, and when various treatment protocols dont work it is the patients problem.

remember that the health system of the larger countries are controlled by the pharmaceutical companies the money they pass onto the governments.
it will be a long time before we see a health system that gives efficient accurate diagnosis and treatment with diet rather than throwing scripts at people......and another script when the first drug doesnt work

[tex]

Hi Lyn,

I thought you had me there for a few seconds, but when I checked Wikipedia, I found that Monoclonnal Gammopathy of Undetermined Significance does indeed have a discrete set of diagnosis criteria, thus disqualifying it from the "created out of expediency" competition.

Diagnosis

MGUS is a common, age-related medical condition characterized by an accumulation of bone marrow plasma cells derived from a single abnormal clone. Patients may be diagnosed with MGUS if they fulfill the following three criteria:[1]

1. A monoclonal paraprotein band less than 30 g/L (< 3g/dL);
2. Plasma cells less than 10% on bone marrow examination; and
3. No evidence of bone lesions, anemia, hypercalcemia, or renal insufficiency related to the paraprotein.

As you say, though, the descriptive information suggests that it is of dubious significance, except for possibly 1 or 2 percent of the individuals who are diagnosed with it.

Monoclonal gammopathy of undetermined significance (MGUS, unknown or uncertain may be substituted for undetermined), formerly benign monoclonal gammopathy, is a condition in which a paraprotein is found in the blood during standard laboratory tests. It resembles multiple myeloma and similar diseases, but the levels of antibody are lower, the number of plasma cells (white blood cells that secrete antibodies) in the bone marrow is lower, it has no symptoms or problems, and no treatment is indicated. However, multiple myeloma develops at the rate of about 1-2% a year, so doctors recommend monitoring it yearly.

So, while it's true that MGUS is a benign disease, it does indeed have a discrete diagnostic protocol.

IBS could just as easily be called 'intestinitis'.

No, that would be incorrect. The primary distinguishing feature between "IBS" and the IBDs, is inflammation. No inflammation is present with "IBS". I'll bet you knew that, though.

Tex

[Gayle]

Quite an interesting discussion going here.

Tex, I figured that post I made would get a response from you!

IBS is officially recognized as an appropriate labeling, meaning as in a “diagnosis”, for a collection of Functional symptoms (i.e. a syndrome) which is NOT a DISEASE, -- further indicating that there seems to be no Organic basis for those symptoms.

Polly has contributed another here with their FUO label for fever of undetermined origin -- i.e. another Dx by symptom -- with no identifiable cause.

Google (IBS, Rome criteria) to find the officially applied explanation for labeling as IBS.

Although there are times I’m sure when Docs would like to throw up their hands and say – I don’t have a real clue in Hades’ – we also have to understand -- that would not translate well on medical records. Or to patients looking for some kind of explanation for their complaints. For purposes of coding for billing as well as Database entry – a DX must have been assigned by a code number, and IBS would have been assigned a code number. I suppose this comes under the heading of beaurocratic administrative business arm of medical practice influencing some actions!

There are just a ton of people out there with significant GI issues. Walk through any drug store and survey all the various products on the shelves directed at these various maladies with our GI systems. It is a huge market, indicative of the many, and variety, of needs!

I realize that my experience with the GI Docs’ is very limited. But as we live in 2 places, I see one GI group in MN and another in AZ. It has never been my experience not to be told about just how little is known about MC. And in fact, that has frequently prompted some interesting and frank discussion. Possibly I push harder???

And when they talk about IBS, they do often talk in terms of a particular symptom “seemingly more likely” to fall under the IBS category. When/if you look up this set of criteria for IBS, you will read, and appreciate, that there is so much overlap between IBS and MC, that any accurate differential assessment is not really possible.



Gayle

[harma]

another problem with IBS, before any other cause has been ruled out, it is already called IBS, especially in cases of 'milder' symptoms, that don't make you ill and are "just" uncomfortable. Personally I have no problem with the tag IBS, if it is seen as a group of symptoms that occur together in the gut, without any other known cause.

My idea is more and more IBS is seen as an separate independent disease. Before other causes are ruled out, people are told it is IBS. I thought for years I had IBS, due what I heard on tele and radio and read in newspapers and magazines. They should say if you have these and these symptoms, go and check out what the problem is. In the end if they dont find anything'else than probably you have IBS, that is how we call bowel problems without any known cause.

And a lot of people with an IBD or celiac disease had bowel troubles for years, before they were diagnosed with a "real" bowel disease. All the years before they thought or they were told, it is IBS, eat fibers, not to much stress and learn to live with it. Or even worse you get the idea it is your own fold, because you don't deal with emotions in a proper way, are you are to nervous, it is in your personality. That the idea I always had about myself and my bowel problems. Never heard a doctor say that a heart attack is caused by wrong anger management.

That is one of the things I am still a bit frustrated about, all these years, there was something really wrong with me and I thought that I was making it up. I wasn't ill, had only the uncomfortable symptoms. I didn't take is seriously, but mostly due to the wrong information about IBS. And thanks to that I have to deal with a mild version of osteoporoses.

To be honest I am glad last year my symptoms got real serious. At least I have a diagnoses and know what I can do to solve it.

[tex]

we also have to understand -- that would not translate well on medical records. Or to patients looking for some kind of explanation for their complaints. For purposes of coding for billing as well as Database entry – a DX must have been assigned by a code number, and IBS would have been assigned a code number. I suppose this comes under the heading of beaurocratic administrative business arm of medical practice influencing some actions!

That's my point - it's an ambiguously-described condition, given a name, simply because of a desire for expediency.

When/if you look up this set of criteria for IBS, you will read, and appreciate, that there is so much overlap between IBS and MC, that any accurate differential assessment is not really possible.

Sure an accurate differential assessment is possible - it begins with a set of biopsy samples.

Tex

[Gayle]

Gayle wrote:

When/if you look up this set of criteria for IBS, you will read, and appreciate, that there is so much overlap between IBS and MC, that any accurate differential assessment is not really possible.

Tex wrote:

Sure an accurate differential assessment is possible - it begins with a set of biopsy samples.

Whoops -- Sorry Tex -- taken out of context -- a little misunderstanding -- the point of the commentary was missed.

This was part of a continuing conversation about those of us already Dx’d with MC, experiencing some occasional disruptions of routine. (i.e. sometimes things moving to fast, some times there is excessive bloating, sometimes things don’t move at all for days, etc..)

I feel that I have tended to become somewhat hyper-vigilant regarding these issues, and have been trying hard to learn not to be hyper-reactive, as these disruptions may, but may not, always be due to the MC. Once diagnosed with MC, (yes, of course by biopsy) one can’t be running back for immediate further “biopsy” confirmation of what is going on every time we experience some kind of disruption.

We are all in the same boat here with this condition. But the waves that rock our boats are different -- and vary according to various circumstances.


Gayle

[Liz]

I was disagnosed with 'Non Specific Colitis' &/ or IBS for nearly 30 yeaes before my doctor did a biopsy. He told me then that I had this "rare" disease called Collagenous Colitis" that usually appears in older women.

I am of the opinion that it is not nearly as rare as it is thought. As we all know, the bowel may look perfectly normal unless the biopsy is done which would be the case in many, many colonoscopy's. There are probably lots of people walking around (or more likely running without a proper diagnosis & consequently no chance of getting any help.


)

Love

Liz