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Discussion Starter · #1 ·
Hi All!Because of all the information that's posted here about Rome II Criteria and how doctors should diagnose IBS/ what tests should be done, I thought it wouldn't hurt to give a word of advice to new people (and some old) which I've found has helped me tremendously.It is common sense really - but ALWAYS get copies of your medical files from each and every doctor who you have ever seen concerning your IBS (pre-diagnosis and post-diagnosis). And make sure it includes test results, doctor's reports, and try to keep a list of all prescription medicines you've been on (stating how long you took them and what the results were). If you're like most of us, you'll see several doctors over your life for IBS and not all of them will get your past medical files from previous doctors nor even look through them adequately to see if possible alternative reasons for your illness has been ruled out.In a perfect world, doctors would spend more than 5 minutes looking at your file before you show up at an appointment and will follow the latest Rome criteria. However, many of us were diagnosed before the criteria came into being [1988]. Others of us had doctors who don't know or don't care about the criteria - INO, just because the criteria is out there doesn't mean doctors MUST or WILL follow it. BTW, the website for information on rome criteria is http://www.romecriteria.org. I shall give my personal story as an example. I first began having symptoms severe enough to see a doctor back in 1991. I was 13 or 14 at the time. The first gastroenterologist just prescribed meds w/o any diagnosis. When the drugs didn't work and no better information could be received from doc#1, I went to doc#2. Doc#2 did lots of diagnostic tests: ultrasound, colonoscopy, barium x-ray. He never tested stool samples and there was no testing for food intolerances/allergies. He diagnosed me as having IBS. When his only advice was to relax and take citrucel, Doc#3 can into the picture. Doc#3 did nothing, relied upon Doc#2's incomplete diagnosis, and recommended metamucil (and to relax). Doc#4 relied upon Doc#2's diagnosis and recommended I try praying and establishing a connection with God
. Doc#5 relied upon Doc#2's diagnosis and suggested I take valium . . . and eat more fiber. Doc#6 FINALLY did a stool sample (but only for campylobacter and H.pylori), took blood samples, and tested me for lactose intolerance. I suspect since his wife was LI, he thought it appropriate to test for it. Lo and behold, I did have severe LI and although it did not end my symptoms they were drastically reduced. It took 7 years to get to that point. Doc#6 also did a Gluten intolerance test and suggested I get tested for food allergies. When Doc#6, couldn't give any more info and reaffirmed that I may have IBS, Doc#7 entered. Doc#7 was into SSRIs so began the trip into Paxil-ville. When those proved ineffective, Doc#8 suggested other types of antidepressants. When those didn't work, Doc#9 wanted to try more antidepressants, gave me hyoscamine and did give me Lotronex when it first came out. Doc#10 though zelnorm, nulev, and perhaps lexapro might work. Doc#11 wanted to try more antidepressants despite my request to retest my stool for other bacteria/pathogens and to check to see whether fructose intolerance or SIBO may be playing a role. So here I am now, after having found that I do have a bacterial problem (which I was never tested for). And who knows how long it's been in my system. Moral of the story is that if the doctor who diagnosed you hasn't eliminated the other culprits for gastro distress, you may suffer more or longer than you had to because often other doctors will see the diagnosis, assume everything's been done, and won't doublecheck to see if alternative issues have been eliminated. Also, just because a doctor takes samples doesn't mean they check for everything. One doctor may use a blood test to identify one thing while another may use it to identify something else.So GET YOUR RESULTS and see what you were tested for. It'll save you some trouble in the long run and may put you in the right direction as to the cause or alleviation of your symptoms. Several people on this site were misdiagnosed with IBS. Some of us had different problems that when identified, although IBS was not eliminated, at least improved our symptoms and quality of life a bit. That's all I have to say. Good luck
 

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Very wise advice. I have copies of all of my records, from all of the dr's(3 in my case)in my IBS journey. The dr I go to now actually wanted to review my records BEFORE he saw me and I also faxed him my "bowel" history. He's a keeper
 

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Very wise advice. I have copies of all of my records, from all of the dr's(3 in my case)in my IBS journey. The dr I go to now actually wanted to review my records BEFORE he saw me and I also faxed him my "bowel" history. He's a keeper
 

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That's a helpful post. It is similar to my story of frustration.
quote:So here I am now, after having found that I do have a bacterial problem (which I was never tested for). And who knows how long it's been in my system.
I take it you got your results from a CDSA from GSDLabs?I didn't see where you posted this information. What did they find? Potential pathogens? Pathogens? or just low levels of beneficial bacteria?Can you post it in your Dr D thread in the Products Forum so we can all see.
 

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That's a helpful post. It is similar to my story of frustration.
quote:So here I am now, after having found that I do have a bacterial problem (which I was never tested for). And who knows how long it's been in my system.
I take it you got your results from a CDSA from GSDLabs?I didn't see where you posted this information. What did they find? Potential pathogens? Pathogens? or just low levels of beneficial bacteria?Can you post it in your Dr D thread in the Products Forum so we can all see.
 

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Discussion Starter · #8 ·
Yep, that's a lot of doctors - although I did leave out the doctors I had to battle with over pelvic floor disfunction.
I'm sure if I was older when I got IBS and had access to some of the info I have now I wouldn't have had to go through so many doctors. It took a great toll on my mom and I.Kel, I'm waiting on getting a copy of my CDSA report. But Dr. D did tell me during my consultation on Friday what they found. I can't spell the word so I haven't been able to find anything about it. And I wanted to make sure it was correct when I post about in the products section. I expect to get it today or tomorrow.
 

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Discussion Starter · #9 ·
Yep, that's a lot of doctors - although I did leave out the doctors I had to battle with over pelvic floor disfunction.
I'm sure if I was older when I got IBS and had access to some of the info I have now I wouldn't have had to go through so many doctors. It took a great toll on my mom and I.Kel, I'm waiting on getting a copy of my CDSA report. But Dr. D did tell me during my consultation on Friday what they found. I can't spell the word so I haven't been able to find anything about it. And I wanted to make sure it was correct when I post about in the products section. I expect to get it today or tomorrow.
 

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Yes you are right anme about being older. I believe you are only 25 or so? Besides one fairly comprehensive work up which I had in my early thirties and that too because my cousin was a doc I did not go to a doc until I was forty and then I was armed with info from this board.
 

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Yes you are right anme about being older. I believe you are only 25 or so? Besides one fairly comprehensive work up which I had in my early thirties and that too because my cousin was a doc I did not go to a doc until I was forty and then I was armed with info from this board.
 

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I'll keep my fingers crossed that this is what is causing all your problems. Hopefully your progress will then mirror calid's. they found 2 bad bugs in her.
 

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I'll keep my fingers crossed that this is what is causing all your problems. Hopefully your progress will then mirror calid's. they found 2 bad bugs in her.
 

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I have had IBS as long as I can remember. I was diagnosed when it was still called "Spastic COlitis". I have had resonable management for a few years with hyoscyamine and watching the diet. I don't have a lot of bowel pain, normally, more between the ribs and the navel. What I do have are attacks, after eating, of (as one friend calls it) violent, explosive diarreah. I get really dehydrated and then start to shiver, become nauseous and altered. If I am out and it happens I have to stop at a bathroom every few miles. SOmetimes I end up in the ER. THere is definitely an anxiety factor involved that makes an attack much worse if I am out. Saturday, I was coming home with my husband from dinner about 40 minutes from the house and an attack came on. I had taken Immodium before going out, another at dinner and then two more before the diarreah as well as a Pepto Bismol. I made my husband stop and we took a hotel room so I would be able to relax about it. This made the whole thing easier, but is not an ideal situation. I have cancelled a trip to Asia because of this and I am becoming depressed and angry.I have an appointment tomorrow with my sympathetic doctor and I am wondering what meds other folks get. Also, besides the colonoscopy and such, what are the tests that are normally performed? THanks
 

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I have had IBS as long as I can remember. I was diagnosed when it was still called "Spastic COlitis". I have had resonable management for a few years with hyoscyamine and watching the diet. I don't have a lot of bowel pain, normally, more between the ribs and the navel. What I do have are attacks, after eating, of (as one friend calls it) violent, explosive diarreah. I get really dehydrated and then start to shiver, become nauseous and altered. If I am out and it happens I have to stop at a bathroom every few miles. SOmetimes I end up in the ER. THere is definitely an anxiety factor involved that makes an attack much worse if I am out. Saturday, I was coming home with my husband from dinner about 40 minutes from the house and an attack came on. I had taken Immodium before going out, another at dinner and then two more before the diarreah as well as a Pepto Bismol. I made my husband stop and we took a hotel room so I would be able to relax about it. This made the whole thing easier, but is not an ideal situation. I have cancelled a trip to Asia because of this and I am becoming depressed and angry.I have an appointment tomorrow with my sympathetic doctor and I am wondering what meds other folks get. Also, besides the colonoscopy and such, what are the tests that are normally performed? THanks
 

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Discussion Starter · #16 ·
Just turned 27
Thanks, kel. I'm keeping my fingers crossed too.Steph1, I used to have symptoms like that during my first few years of IBS. I really relate to the shakiness/shivering, nausea, and explosive D -I would also get cold chills. They went away after I stopped eating milk products.Check out this page for different tests http://www.ibsgroup.org/main/tests.html And this for medications http://www.ibsgroup.org/main/drugs.html I love this site.
 

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Discussion Starter · #17 ·
Just turned 27
Thanks, kel. I'm keeping my fingers crossed too.Steph1, I used to have symptoms like that during my first few years of IBS. I really relate to the shakiness/shivering, nausea, and explosive D -I would also get cold chills. They went away after I stopped eating milk products.Check out this page for different tests http://www.ibsgroup.org/main/tests.html And this for medications http://www.ibsgroup.org/main/drugs.html I love this site.
 

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Great Advice Amnegrl! Nancycat, I'm in Massachusetts too, and my gastro doc is ok, but not as helpful as I'd like, and am looking for another doc. Would you mind sharing the name of yours? I'm in the Boston area, but willing to travel a bit! Email me if you'd rather. Thanks!
 

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Great Advice Amnegrl! Nancycat, I'm in Massachusetts too, and my gastro doc is ok, but not as helpful as I'd like, and am looking for another doc. Would you mind sharing the name of yours? I'm in the Boston area, but willing to travel a bit! Email me if you'd rather. Thanks!
 
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