[trbell]

I used to think I had a number of strange difficulties. Now I know I have a diagnosis - a common syndrome. Does it help me to know I have a 'disease'?tom

 

[NewForMe]

They have yet to classify IBS as a disease because there is no "clinical" proof that diagnoses IBS. Plus, most of the bozo's (docs) still think it is all in the head and it is often not.

 

[Guest]

sorry...it's still a stupid idiotic painful and elusive syndrome. But you know what????? It SHOULD BE categorized as a bloody DISEASE!!!!!! I bet that "they" whoever THEY are don't even KNOW all the TRAITS that go with it!!!!!

I bet they don't even CARE what it does to people.I bet they don't even KNOW the extent of the damage. ALL the damage. OH I am NOT having a good day today.....ok right now....the days not over yet. And I refuse to apologize to anyone!!! Arghhhhhhh

 

[Guest]

Ok,I'm sorry. Shouldn't have taken it out here.Deb

 

[maggiew]

I think that per the FDA it is a disease:"Through redefining disease, FDA is trying to make anything that is not a normal state, a state of disease." The FDA proposal defines disease as "any deviation from, impairment of, or interruption of the normal structure or function of any part, organ or system (or combination thereof) of the body that is manifested by a characteristic set of one ormore signs or symptoms, including laboratory or clinical measurements that are characteristic of a disease."

 

[trbell]

i think of ibs more as a group of problems that seem to occur together and the diagnosis is usually something like, 'Well, you have a problem, but it's not this or that which we can treat.but my question was more about how people feel about being 'sick' I guess. Sometimes it helps to explain to myself and others, "I have ibs" & sometimes i'm sick of being sick.tom

 

[Homebound]

I agree with brksmom! Just because they don't know what causes it, or what test will prove it, doesn't mean it's not a disease. To me it just means medical science doesn't have a clue when it comes to IBS. And by saying it's not a disease it's almost like they are making it less important or something. With all we go through I would say it's a disease, regardless of what they say.Jennifer

 

[zigmissus]

I think we all have a disease, but probably not the same one, and it's not IBS. Look at how many of us have a variety of other health problems! IBS is simply a wastebasket diagnosis after they've ruled out everything else they know about. It should really be called Irritable Bowel SYMPTOMS, because all the diagnosis of IBS means is that you fall into the criteria of a list of digestive dysfunctions. The diagnosis in no way explains WHY these horrible things are happening. Even the list of qualifying symptoms is so varied that it seems laughable to assume they're one disease. How can someone with chronic constipation be said to have the same disorder as someone who has daily diarrhea? When it comes to diagnosing IBS, in my opinion it's the opposite of the parable about the three blind men and the elephant. Instead, doctors are in a room with an alligator, a giraffe and a chicken, and are describing one animal with sharp teeth, a long neck and feathers. We all sure as hell have something wrong with us, but calling it IBS is just a convenient way for doctors to describe (or dismiss!) our symptoms.

 

[sickofsick]

I think IBS should stand for Irritable Body Syndrome!sickofsick

 

[Mike NoLomotil]

ZIGMISSUS nails it...this is, has been, and remains a wastebasket diagnosis into which are thrown divergent symptomologic sets which are melded inappropriately from a therapeutic and research viewpoint both into so called "IBS"...which if you must have a wastebasket with a name "Reactive Bowel Syndrome" fits alot better, and some more enlightened clinicians encourage the use of this acronym instead. But acronyms aside, I have a viewpoint to put forth for consideration, that's all.While a "syndrome", for now and by definition, is what IBS is classified as (a specific group of identifiable and quantifiable clinical symptoms or specific presentation of indeterminate etiology)it will not be long before sufficient information is released from private research of the etiology, wherein the syndrome will more likely be classifiable as a disease or group of diseases whose etiology is somewhat divergent. Just as in reality there are divergent symptomologic-sets associated with IBS (we all know ourselves as C's or D's or cyclics and then have numerous precipitating events which led to our onset of symptoms...infection...trauma...antibiotics..NSAIDS...juvenile onset of indeterminate origin..."whatever"). There exists sufficient technology Now to study very closely what occurs at the cellular level in this and other realted "syndromes" (ie: fibromyalgia) heretofor difficult to nail down etiologically. Most of the financial committment is not focused on the underlying basis, but methods of attenuation or intervention in the mechanisms triggered which produce the consequences, since this is where the research investment is most quickly returned from the marketplace (interventional pharmacotherapy).The first information I believe will emerge separate from pharmaceutical research will be the underlying cellular mechanisms of action which can now be seen within the immune system. These will be elucidated. When published in sufficient detail and under "the right name in the right place", the recognition of the symptoms set as a disease will be quantifiable. This, from what I see and discuss daily in this "private sector" can occur within 2-3 years. The findings are there and accumulating already, and some complimentary findings have also been seen, but in separate places where the investigators are not linked as of yet. They must be linked up and have sufficient dollars shoved beneath them to push them to the surface of the mainstream medical community. This effort is underway (seeking and accumulating that funding). This stage when complete will answer the questions of "who, what, when, where and how" in the IBS etiology equation. This knowledge will facilitate more widespread use of prophylactic therapies and reduce the level of dependence upon interventional therapies."WHY", (ie: what has caused the identifiable and quantifiable alterations in specific body system function) will be much harder to source, since there are various precipitating events and there are multiple-physiologic pathways to end-symptom elicitation involved in the "syndrome"...but this points the way to the source of a cure.The final step, which will take longer but is not likely to receive any funding until that first step is completed, (since how to apply the funding and in what direction will not be clear until then) it appears from those researchers I am around (and looking specifically where the institutional capital investments are going)will be in those private research firms committed to research of disease etiology at the sub-cellular level and developing marketable interventional "genetotherapies" for prevention and/or reversal based upon those findings.This will take longer, but I think once the first step is accomplished this will speed the flow of dollars into the second-phase investigations as the paradigm will be forced to shift by the significantly large market-forces represented by this growing problem (IBS and related dysfunctions).Only my take on it, based upon the view from my particular seat.Have a DFDMNL__________________ www.leapallergy.com

 

[flux]

quoterobably not the same one, and it's not IBS. Look at how many of us have a variety of other health problems! IBS is simply a wastebasket diagnosis after they've ruled out everything else they know about.

IBS is a clinical entity defined by a specific set of criteria, the ROME II criteria. No one should be diagnosed with IBS unless they meet this criteria. Now doctors are finding that there are some who really have pelvic floor dysfunction (e.g, incomplete evacutation) and constipation (defined by transit time study and considered separate from IBS), but beyond that, I don't think anyone in IBS field believes that there is any substantial number of people who have been diagnosed with IBS who really have some hitherto undescribed novel condition. IBSers really do have much the same complaints.

 

[Stace]

Do any GI's read this bulletin board? I just hope that they do. They would learn a great deal here about a disease (in my opinion) that they all too often dismiss and blow off. I live in a major metropolitan area and have been to 4 GI's and I truly believe that overall this branch of medicine is FAILING their patients who suffer with IBS. Stacey

 

[JennT]

Gee, Flux,I scrolled past and had to go back up to make sure it was you... I'm not sure what to do when I see you post without a flashy graphic!

Although it's generally not categorized as a "disease", I usually refer to it, when telling people why I cannot do this or that, as a "chronic digestive disorder". To me, this sounds less all in my head than the word "syndrome".------------------JennT

 

[zigmissus]

Now that's interesting, Mike! You mean they're at least TRYING to find out what causes IBS? You're right; all they have rigth now is palliative therapies. As with cancer, I don't think they'll be a definitive "cure" until they know exactly what the cause is.Flux, exactly what are the Rome II criteria? (Provide a link!) My understanding is it mostly involves negative criteria, as in ruling out other possible causes of similar symptoms. In fact, most symptoms of IBS can be subsets of other diseases such as UC and Crohns. I also disagree about the rarity of other, undiscovered causes--during my nearly 2 years on this BB, I've seen members diagnosed with a number of conditions that could be the cause of or contribute to their IBS, including endometriosis, gynecological cancers, gallbladder disease, thyroid disorders, c difficile infection and, in my case, mixed connective tissue disorder. And surely you don't think that researchers have already corectly discovered and named every disease that presently exists?

 

[eric]

Zig, this link has the rome criteria in it and also some of the most recent research on IBS. This really should be a must read I feel. http://www.gastro.org/adhf/gi_ibs2.html ------------------ http://www.ibshealth.com/ www.ibsaudioprogram.com [This message has been edited by eric (edited 12-12-2000).]

 

[Mike NoLomotil]

HI ZIG.Yes there are investigators trying to find the underlying cause(s) of IBS by approaching it from different angles. Several appear to have zeroed-in on those pieces of the puzzle that they are, as individuals, predisposed to zero-in on. In the not too distant future I believe the linkup will be made between several distinct findings by sevral distinct groups when a specific investigation yet to be done is funded and completed. I know and interract with these investigators, and they are trying to figure out the protocol, as it is a little "technologically challenging". By the time the protocol is complete the funding source should be identified. There is a diverse group of clinicians being lined up to consult on the project and who have clinical experience with this approach.It's interesting because it is actually "visible", in more ways than one.I do not think we are doomed to limited options forever.MNL________________ www.leapallergy.com

 

[Homebound]

I think the Rome II criteria holds pretty true to most of us with IBS. Crohn's and IBD do have other symptoms that IBS does not have, one being dark bloody stools. Although I agree I have seen a lot of people end up having other things then IBS, but these people usually had other symptoms that pointed away from IBS also.Jennifer

 

[trbell]

this topic seems to be developing in interesting directions - can we write a faq on it to send to the media and to doctors?tom

 

[Guest]

What are the ROME II criteria?

 

[linr]

All I know is that when I tell people that I have IBS they really don't take it like I have a disease. After all, something with the words 'irritable' and 'syndrome' don't sound like a big deal to most people. It's like telling them that your baby has colic and will get over it eventually. Occasionally I will go into greater detail if I am with someone who really seems to care.They are usually horrified to think that someone really has to deal with all of those things all the time. I think that even many of the Drs. out there really don't know what we go through. I guess it's sort of like trying to explain to a man what labor pain is like (those with IBS might have some idea though). Guess we have to hang in there until the cure or at least some relief is found.