Assumptions, Self-Diagnosis, & Uneducated Doctors
#353272 - 12/17/09 10:00 AM
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Windchimes
Reged: 09/05/09
Posts: 581
Loc: Northern California
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Perhaps many on these boards are like myself. When I joined the message boards I put an Icon on my desktop to take me directly to Heather's website. However, I found yesterday that the home page I was looking at with regard to the product sale has been updated in some ways. Besides the FREE shipping offer that is presently going on, here is what I found that is of utmost importance to those who make assumptions, self-diagnose, and assume that uneducated doctors who simply say "It's IBS" necessarily know what they are talking about. There is more to properly and adequately diagnosing IBS:
"Irritable Bowel Syndrome Diagnosis? These Diseases Must Be Ruled Out First!
In addition to verifying that your symptoms match those of the Rome II Guidelines, it's also important that the following diseases are excluded before you accept a diagnosis of Irritable Bowel Syndrome:
Colon and carcinoid cancer
Inflammatory bowel diseases (Crohn's and Ulcerative Colitis)
Bowel obstructions
Diverticulosis / Diverticulitis
Gallbladder Problems
Food allergies & intolerances
Celiac (a genetic, autoimmune disorder resulting in gluten intolerance)
Bacterial infections and SIBO
Intestinal parasites
Endometriosis
Ovarian cancer
As a rule, all possible physical, structural, and infectious abnormalities of the GI tract need to be unquestionably eliminated before you agree to an Irritable Bowel Syndrome diagnosis. This requires a physical examination, preferably by a board-certified gastroenterologist. The medical tests needed to rule out disorders other than IBS will depend upon your age, health history, family health background, and specific symptoms.
Once you have a firm IBS diagnosis, take heart. While there is no cure yet, there are many ways to successfully manage - and prevent - all Irritable Bowel Syndrome symptoms. You can control your IBS, not vice versa"
It's time for me to update my website icon, and perhaps others might wish to do this as well.
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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Self-diagnosis is not a good thing at any time.
The Rome III guidelines for diagnosis functional GI disorders such as IBS do not require other diseases to be excluded. You can read about it the article Diagnostic Testing in Irritable Bowel Syndrome: Theory vs. Reality starting on page 10 the UNC Digest. A short excerpt follows. It might be helpful if the page on the web site was updated to reflect this new position by international GI community.
Quote:
Guidelines State that IBS is Not a Diagnosis of Exclusion
Despite the tendency to order diagnostic tests in the face of IBS symptoms, the diagnostic criteria for IBS, such as those supported by the Rome Committee, encourage clinicians to make a positive diagnosis on the basis of validated symptom criteria, and emphasize that IBS is not a diagnosis of exclusion despite the extensive list of other conditions that masquerade as IBS. This recommendation is based on extensive evidence that diagnostic testing is generally very low yield in patients with IBS who otherwise lack alarming signs or symptoms (e.g. blood in the bowel movements, unintended weight loss, anemia, etc). Studies show that meeting the Rome criteria for IBS nearly ensures a lack of underlying alternative conditions. Specifically, if a patient meets the criteria for having IBS, then there is a 98% chance that there is, in fact, IBS – and only a 2% chance that there is some other condition lurking in the background. So, patients should ask their physicians if they "meet the Rome criteria." If they do, then there is a 98% chance that their diagnosis is, indeed, IBS – not something else.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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Syl, With all due respect here I would like to ask you a question. What if you personally happened to be one of the two in 100 who were casually diagnosed as IBS and lost your life unnecessarily to some serious disease? What if one of those two in 100 happened to be your beloved wife, or one of your children?
I lost a close high school classmate at age 44 because she was told that she had IBS. Later it was discovered that she had metastatic colon cancer and lost her life. The surgeon labeled this "an entirely unnecessary death had she had the appropriate workup for her symptoms and appropriate treatment a year prior". My friend left a grieving husband and two children (a boy and a girl) who were not yet fully raised.
Four years ago, a friend of mine who had been casually diagnosed with IBS by a physician actually had diverticulosis and diverticulitis. She had a 'blowout' during the night and was rushed to the hospital via ambulance. She ended up with a permanent colostomy after many months of misery and multiple painful surgeries and recovery periods.
My cousin lost her husband at age 50 due to colon cancer, and he had been told he had IBS by his general practitioner. There was no further workup, and my cousin cooked up a storm daily for IBS control, only to find a year later that her husband had had colon cancer and not IBS.
I say to all of you... "bleep" the Rome III diagnostic criteria and make SURE that you do not have any other far more serious problems. You may well come to regret your casual assumptions and trust... and by the way, doctors are not little gods. 
Syl, are you going to follow what Heather recommends, or are you going to continue to go against her well advised suggestions? Doing such could cost someone their life and leave behind a grieving family, and little children minus a parent. Is this YOUR website of contradictory input, or is it Heathers website of well advised information?
Much (most) of what you say here in other places is full of wisdom, but this response and continuing position gets a BIG ZERO from me!!!
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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From the patient feedback I get, most docs have never even heard of the Rome Criteria. They diagnose IBS without ANY diagnostic work at all - not even basic bloodwork. They diagnose IBS when the symptoms DON'T fit IBS, and they still don't run any tests.
I'd rather give patients all the info about tests they might need, and all the info about other illnesses that can mimic IBS, and then let them decide if they can trust the diagnosis they've been given.
Even without red flag symptoms, I'd insist on blood work to check for signs of inflammatory bowel disease and for celiac.
I don't think everyone needs the full run of every diagnostic test in the book just to be sure they "only" have IBS. But I also can't in good conscience tell people to just let any doctor they see tell them their symptoms fit the bill for IBS and that's that. Patients need to self-educate in this area and then decide for themselves if they trust what their docs are telling them - or not.
- Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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I agree. On the other hand it would be useful to tell IBS vistors what the Rome III recommendations are and pre-warn them about the resistant they are likely to encounter with medical professionals. Forewarned is fore-armed 
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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You may be right however, it doesn't change the reality with which the medical profession treats us. All IBSers and potential IBSers should be for warned of the criteria against which they are being diagnosed in preparation for the resistance they will likely encounter when they request more tests. As I said to Heather - forewarned is fore-armed
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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You know Syl, you are right about this. I am not speaking of the Rome but of the darn resistance you get from docs. I have begged for the celiac and have yet to find a doc to administer it. I have been told its a childhood wasting disease of which I am neither. They just are not current. My next step is to basically LIE so they will do the necessary testing.
And Heather is right in the fact that most docs do not have a clue about the Rome. You most surely have to be your own advocate. Docs mostly treat us like morons.
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http://www.helpforibs.com/footer/rome_guidelines.asp for people who want them.
I don't know if people will meet resistance from their docs about diagnostic tests or not. Some docs seem to run every test there is regardless of the patient, and some docs won't run tests despite bright red flags everywhere. I almost think this has more to do with things like insurance, a doc's overall competence, and things like that.
My big problem here is that the doctors actually treating IBS patients do not seem to have any idea that the Rome Criteria exist, let alone the details. I'm sure some of them do (and I wish all of them did) but that just isn't the case.
In my own small family, four people in the past ten years (well within the Rome Criteria existence) have been misdiagnosed with IBS (one had simple lactose intolerance, one had celiac, one had gallstones, and one had a liver problem).
None of them fit the Rome Criteria without red flags. All of them were told they had IBS and not told about other disorders that could be causing their symptoms. Some of them were given diagnostic tests (that still did not initially find the real problem) and some were not.
All of them ended up properly diagnosed after doing research on their own, and after reaching the conclusion that their doctors had not figure out their problems correctly. They then persisted in getting more tests.
Not one of them heard the phrase "Rome Criteria" until I mentioned it to them, and they were uniformly upset that their docs hadn't given them these symptom guidelines.
I think the real problem here is educating the doctors, not just the patients. If every family doc and GI doc knew about the Rome Criteria, and actually made sure that a patient fit the IBS symptoms and had no red flags, and only then diagnosed IBS, that would solve just about everything.
I'd bet good money that most IBS patients who go into their docs and ask if they fit the Rome Criteria will be met with a blank stare and the question, "what's that?"
Sad but true, and I hope things change.
- H
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Don't you all find it rather amazing (or annoying) that the patient is the one who has to do the investigation, exploration and homework, and THEN PAY their doctors to provide them (the doc) with continuing education? Something is very wrong and/or backwards here! This is a revolting development for sure.
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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Glad to see that you edited this, even if you didn't mark it as edited. I only hope that others can follow the meaning of this thread in the overall understanding.
Thanks Syl!
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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