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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Abnormal stool frequency (may be defined as greater than 3 bowel movements per day and less than 3 bowel movements per week);
Abnormal stool form (lumpy/hard or loose/watery stool);
3. Abnormal stool passage (straining, urgency, or feeling of incomplete evacuation);
4. Passage of mucus;
5. Bloating or feeling of abdominal distension.
Supportive Symptoms of IBS:
2. More than three bowel movements a day
3. Hard or lumpy stools
4. Loose (mushy) or watery stools
5. Straining during a bowel movement
6. Urgency (having to rush to have a bowel movement)
7. Feeling of incomplete bowel movement
8. Passing mucus (white material) during a bowel movement
9. Abdominal fullness, bloating, or swelling
I do have a question about mucus though..does it always have to be actual white? sometimes I notice it is white,but for me its mostly clear with fece particles in it or a little yellow,order mucus that sits in me overnight is older looking and a little darker. I have absolutly no red flag symptoms.
oh my symptoms are 24/7 even when its bed time and sometiems I wake up and release tons of gas or also feel uncomfortable. but don't have bm's. but that happens to some of us,right?
Edited by aperson (12/17/09 03:34 PM)
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What you state here, may be true. Even so, you have indicated many things in your posts that are red flags that require at least basic diagnostic testing. It is easy to remain in denial and "hope" that you only fit the basic criteria for IBS. You also have indicated that you are lonely and have no friends other than your bf.
The best thing you could do for yourself is have the basic colonoscopy performed. This rules out everything on the lower end that might be more serious. Given you don't seem to describe any upper GI symptoms, it is unlikely that you would need any further testing for a concrete diagnosis.
How would you actually feel if you were told that you do not have IBS at all, but rather your symptoms are related to your diet and lack of exercise and the daily motivation to fully participate in life? Would you be disappointed that you do not have IBS?
Personally, I think you would be disappointed. You do need some exercise (walking in the neighborhood or along the roadside, even in the snow. Look at the beautiful trees and nature, the birds, a wild animal here or there.
Sitting all day is not good for anyone. Not developing friendships and being connected outside of your home (beyond your job and family) is not good either. Perhaps you could find someone locally to teach you a craft, or how to cook. There are elderly people everywhere who would love to have you visit and teach you something. They are lonely too!
My heart goes out to you, yet only you can make the appropriate changes and stop looking for reasons, making excuses, and moving forward to make a better life for yourself.
It also appears that you may be attempting to get into recipes that go beyond your equipment on hand and your understanding of IF and SF. As soon as I can get to it, I will email a list of simple things you can keep on hand in your pantry (or bedroom) that will provide you with an abundance of easily prepared and tasty "safe" meals that require little preparation. Even so, you would need to commit to eating three small meals a day and getting some exercise, snacking safely in-between.
It is defintely time for change if you genuinely want to improve overall and have a life, as you say you do. Be careful about buying into self-pitty and excuses that deprive you of a full life. A colonoscopy can be arranged for you through your Social Services Department in North Dakata. I suggest that you begin there, while contemplating the other suggestions here.
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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I've been a loner my whole life,so before I had ibs,never had any problems with food until I got ibs. No problem with being a loner,I don't get lonely often,as I've always preffered reading,sitting alone,playing nintendo games. But the times I have wanted to do something like take a walk in nice weather,or get my check from work and put it in the bank before I have to work. I would not be close enough to a toilet or be able to do those things cuz I felt so awful. I never have been able to,severe ibs,can't stay out of the toilet or feel so awful before work with strong urges to use the toilet all day,somtimties I cramp up so bad I can't move until I'm out of the toilet then for a little time after that until I'm in there again. I get 6 hours worth of walking,fast walking,moving my whole body,my arms are lifting baskets filled with fries, they're not light nor really heavy I'd say 5 pounds or more,and you lift those non stop for hours on hours,not only life and dump for hours,but pick them up and put them in the oil,and lift them up to drain them,then thats when you dump all the fries out fo the basket to then be made and frantically moving to scoop and put in boxes.I walk up and down steep stairs and the very LEAST could be 6 tiems a day, its more like 10 or more. I often carry up 35 pound boxes up those stairs,its a challenge but I can carry 2 up in one time,not without some panting and my legs feeling like they got a workout. there's other things I lift like bags full of frys to fill the machin that dumps the fries into the baskets.esometimes moving so much I'm sweating, working hard 5 days a wek,then 2 days a week I spend hours cooking and cleaning.
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It's forewarned- as in fore like before. 
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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Re: sorry Syl
#353309 - 12/17/09 05:33 PM
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Syl
Reged: 03/13/05
Posts: 5499
Loc: SK, CANADA
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Thanks - I knew there was something wrong when I wrote those words but I couldn't put my finger on it And for armed should be 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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In regards to the Rome 111, its ask your doctor if they are using it.
The diagnoses of exclusion was changed a long time ago. But heather is right and research doctors know this and are trying to educate gastro doctors and primary care doctors a long time after they have come up with the differnt rome criteria.
The next most common for the most part misdiagnoses is celiac.
There is also a problem in running to many tests which cause more anxiety and more money.
Most people can confidently be diagnosed with IBS and one way is to ask your doctor if they know about and use the rome criteria and that helps educate thm as well.
I agree with blood tests and stool work and basic testing that can help rule out quite a few serious conditions.
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My website on IBS is www.ibshealth.com
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There is a very good article here in pdf format
Guest Column
Brennan Spiegel, MD, MSHS
Assistant Professor of Medicine;
Program Director, UCLA GI Fellowship Training Program
Guest Column
Editor's Note: In July of this year, our Center was delighted to host Brennen Spiegel, MD
as a Visiting Professor of the UNC Center for Functional GI and Motility Disorders and
the Division of Gastroenterology and Hepatology. During his stay, Dr. Spiegel presented
at a Division Research Conference on the topic, "Introduction to Health Related Quality
of Life Measurement" and he also spoke at a Center Luncheon on "Culling the Wheat from
the Chaff in Irritable Bowel Syndrome". This luncheon topic is also the basis of his Guest
Column in this issue of The Digest. We hope you enjoy this article.
Diagnostic Testing in Irritable Bowel Syndrome: Theory vs. Reality
http://www.med.unc.edu/medicine/fgidc/Autumn_2009_Digest.pdf
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My website on IBS is www.ibshealth.com
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That article and the quote from it sparked the debate in this thread
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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,
I think this thread has sparked some education here, even beyond 'food for thought'. Debates are not a bad thing if handled respectfully, and I think everyone has done that in their posts here.
Given educating doctors seemingly is a part of what many are having to face to get proper care, I am working on a project in my local rural area. I personally visit my chiropractor once every four weeks for a maintenance spinal adjustment. This is particularly helpful during the summer months when I am gardening and doing some rather stupid things that my back doesn't like. His office uses a 'Pro-Adjuster' which is computerized, and does not require guessing nor spinal 'cracking' from the neck to the tailbone. Absolutely State of the Art equipment with wonderful results. The difference in the spine before the adjustment, to the after result, is clearly shown on the computer screen, though sometimes taking 2-3 passes to align the spine. There is no pain nor discomfort, nor cracking sounds.
Now, back to what I was gonna say... because this is a Wellness Center, I am working with the other chiropractor in the office who orders the products that they sell. She is very much open to selling Heather's products and is extremely impressed that they are organic. It is my hope and prayer that this Wellness Center will carry Heather's products by next spring. If so, they will be the first to do so in Northern California. They have many patients with IBS that would definitely benefit from the products. In addition, these are so very good for those who don't even have IBS.
I believe that if more people would eat an IBS-structured diet, or a diabetic diet, they would be healthier overall and remain healthy for the rest of their natural lives.
Thanks Syl for your kind input in this and many of the posts I have read or initiated. We need people like you to give us the 'guts' (excuse the pun) to educate others, including the medical community.
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Senior female, IBS-D, presently stable thanks to Heather & Staff
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