Age of onset?

[Lucy_B]

Hi, everyone! I'm sure this poll (or a similar one) probably exists out there somewhere, but I didn't find it with a quick search. I am just curious to know how old we all were when first diagnosed. My assumption is that we will fall across a pretty broad spectrum. Thanks in advance!

Lucy

[Gabes-Apg]

Good poll Lucy,

Even if it has be done before it would be good to get an updated matrix....

[HappyBird]

I am just curious to know how old we were first diagnosed.

I haven't had an official diagnosis and very unlikely to subject myself to another colonoscopy just to get a label. It's not worth the pain and risk. There seems I be a reluctance amoungst medical practitioners to make a diagnosis on clinical evidence alone. I believe this is wrong.
That's so called First World Medicine for you. In poorer countries doctors make diagnosis on clinical evidence most of the time - it's fast, it's cheap and very few mistakes are made.

If it looks like a duck and quacks like a duck - it so often is a duck.

[JFR]

I am just curious to know how old we were first diagnosed.

I haven't had an official diagnosis and very unlikely to subject myself to another colonoscopy just to get a label. It's not worth the pain and risk. There seems I be a reluctance amoungst medical practitioners to make a diagnosis on clinical evidence alone. I believe this is wrong.
That's so called First World Medicine for you. In poorer countries doctors make diagnosis on clinical evidence most of the time - it's fast, it's cheap and very few mistakes are made.

If it looks like a duck and quacks like a duck - it so often is a duck.

I don't have an official diagnosis either. I too decided that it wasn't worth another colonoscopy to get a label. I didn't need a label to modify my diet.

Also I have the same complaint about medicine that relies almost entirely on the results of medical testing, which are referred to as signs, rather than on clinical symptoms. People who present with symptoms for which no signs are present are often told that there's nothing wrong with them or that their problem is in their head. Before the advent of modern technologies that could look inside the body (the stethoscope being one of the first such technology in the early 1800's), clinical symptoms were all that there was. Now signs have usurped symptoms as the conveyors of medical information.

Jean

[Lucy_B]

This is a good and interesting point. I agree that modern/western medicine has become overly reliant on testing. But I'm also grateful for all the testing that's available, as I believe there are times when it reveals issues that one would never have suspected before. If it weren't for my colonoscopy, I might have no idea that MC even existed. I'd never heard of it before my doctor told me I had it. But I totally agree with you, Jean- proper diet and paying attention to food sensitivities is important no matter what the underlying illness. For the purposes of the poll, I'd probably consider self-diagnosis the same as diagnosis- we can all be our own physicians, after all. :) Thanks for weighing in!

[JFR]

This is a good and interesting point. I agree that modern/western medicine has become overly reliant on testing. But I'm also grateful for all the testing that's available, as I believe there are times when it reveals issues that one would never have suspected before. If it weren't for my colonoscopy, I might have no idea that MC even existed. I'd never heard of it before my doctor told me I had it. But I totally agree with you, Jean- proper diet and paying attention to food sensitivities is important no matter what the underlying illness. For the purposes of the poll, I'd probably consider self-diagnosis the same as diagnosis- we can all be our own physicians, after all. :) Thanks for weighing in!

Lucy - I didn't mean to suggest that testing has no place in medicine, just that there is often an over-reliance on testing. Too often people are told that there is nothing wrong with them because all tests come back normal even though the person is suffering. This is a complicated issue. Sometimes just figuring out what works is more important than getting any particular diagnosis. And sometimes "abnormal" test results can lead to over treatment. A medical historian I like named Jacalyn Duffin say that diagnoses are not things but ideas and sometimes they are bad ideas. I like to keep that in mind.

Jean

[Lucy_B]

Lucy - I didn't mean to suggest that testing has no place in medicine, just that there is often an over-reliance on testing.

Oh no, I didn't think anyone was suggesting that at all! I was just saying I'm glad that we can pick up on illnesses now that were once undetectable. I'm happy for the colonoscopy in my particular case as I truly don't think anyone would have ever mentioned MC as a possibility otherwise (and somehow I'd never come across it in my online research). I 100% agree that there's an over-relianace on testing, or at least a tendency by doctors to discount what people feel vs. what they manifest- symptoms vs. signs, as you say. Honestly, I know a couple of folks who were not diagnosed with one thing or another (which they later found out that they did indeed have) because their doctors didn't think it necessary to test. I feel like that's often what happens with the "IBS" label. I can't tell you how many times I've been told, "you just have IBS", lol. I think I've been fortunate to work with a couple of good GI docs recently who are invested in helping me find a solution to this very real problem, but that hasn't always been the case. Definitely see where you're coming from (and TOTALLY understand not wanting to subject yourself to another colonoscopy- they are noooo fun).

[Lucy_B]

P. S. To the over-reliance on testing point, a good example of that is with thyroid disease. I know quite a few folks whose doctors have assured them they have no thyroid issues simply because their blood TSH levels are within the "normal" range. But what is "normal"? And what about thyroid antibodies and the other stuff that most doctors don't pay much attention to? I definitely believe individuals can have thyroid problems/symptoms even with "normal" test results. This is a neat conversation! :)

[tex]

Lucy - I didn't mean to suggest that testing has no place in medicine, just that there is often an over-reliance on testing. Too often people are told that there is nothing wrong with them because all tests come back normal even though the person is suffering. This is a complicated issue. Sometimes just figuring out what works is more important than getting any particular diagnosis. And sometimes "abnormal" test results can lead to over treatment. A medical historian I like named Jacalyn Duffin say that diagnoses are not things but ideas and sometimes they are bad ideas. I like to keep that in mind.

Very, very good points. I agree that the positive aspects of testing are great. It's the negative aspects that truly suck. Far too many doctors have forgotten how to think for themselves because they have "trained themselves" to rely on tests (and the interpretations that come with them) as the final word. For some unexplained reason, far too many physicians tend to assume that if all the test results are negative, then that rules out any known disease, so there couldn't be anything wrong with the patient. Why on earth they have made such a stupid assumption is anyone's guess, but apparently they are programed to put 100 % of their trust in test results, and like Foghorn Leghorn, the cartoon rooster, they don't want to be confused by any facts that might be seen in the clinical symptoms of any patient.

And the thyroid fiasco is a prime example of that mindset.

Besides, there's too much income potential in tests not to utilize them to the fullest. Many tests require a followup visit (ka-ching!) And if the results are not conclusive (as so many test results are not), then naturally another test should be ordered, followed by another followup office visit, etc. Fortunately, some doctors are kind enough to order all the tests needed at one time (especially GPs), and that helps a lot. A few specialists seem to exploit the system, by ordering 1 test at a time, and repeating the cycle over and over, to maximize the "ka-ching factor". And I'm sure that hospitals and clinics "strongly encourage" physicians who might be lax on ordering tests, to "get with the program", because the only way to pay for expensive testing equipment is to use it, and use it heavily.

That said, there have been many times in the past 10 years or so that I have been mighty thankful that those tests were available.

Tex

[natythingycolbery]

I put 20-30, but with symptoms more than a year earlier as I've recently been discussing my teenage years with my mum and I had phases of mild MC symptoms.

[Marcia K]

I was very lucky, I was scheduled for a colonoscopy when my symptoms began. I didn't have one at 50 mainly because I didn't want to drink the prep and then at 52 I decided it was time because my grandfather had colon cancer. I am grateful that I have a diagnosis and didn't have to go on a wild goose chase trying to find out what was causing the D.

[Blueberry]

I was 15 when the first symptoms of MC were experienced and I began seeing doctors. At first I was ill only a few times a week, but over time the problem became worse, to the point where when I was 20 years of age I was pretty much sick everyday. I believe I had a diagnosis when I was 21 but don't remember for sure. It was around that age when it happened. It was a great disappoint also to finally receive a diagnosis and yet have nothing that helped the condition! The GI condition became a major serious problem around the age of 27 as the stomach attacks could be devastating. It had been suggested by a couple doctors that I try wheat free diet trials, which I did and would follow for a short period of time and then revert back to eating my traditional diet. One GI doctor then suggested eating wheat free permanently which sounded good, but then I made a mistake of buying a bunch of pre-made gluten free dishes that were made with other grains such as corn and brown rice, and high in fiber. I remember being seriously ill from those dishes and it made me wonder about gluten free eating. It was only later that I learned that while not a cure for my GI condition avoiding wheat and other grains, along with limiting fiber helped out my GI health greatly.

[HappyBird]

Besides, there's too much income potential in tests not to utilize them to the fullest. Many tests require a followup visit (ka-ching!) And if the results are not conclusive (as so many test results are not), then naturally another test should be ordered, followed by another followup office visit, etc. Fortunately, some doctors are kind enough to order all the tests needed at one time (especially GPs), and that helps a lot. A few specialists seem to exploit the system, by ordering 1 test at a time, and repeating the cycle over and over, to maximize the "ka-ching factor". And I'm sure that hospitals and clinics "strongly encourage" physicians who might be lax on ordering tests, to "get with the program", because the only way to pay for expensive testing equipment is to use it, and use it heavily.Tex

I agree........

I wrote a long answer in reply to JFR on exactly what you have broadly outlined here. I deleted it before submitting because I thought it too controversial. I have a very good insight into medical practice and can say neither myself or my partner approves.

Private practice where I live is run by practitioners moonlighting from the large medical service where they have permanent positions. That means private consultations are between 6pm-10pm when most services are closed. Private hospitals give grace and favour rooms to many doctors with the unwritten understanding that procedures, admissions etc. will cover the hospitals expenses.

To see a moonlighting specialist who has done a full day at the office and not been home for dinner - you do the maths. Very few are only private and available during regular hours.

[HappyBird]

I don't have an official diagnosis either. I too decided that it wasn't worth another colonoscopy to get a label. I didn't need a label to modify my diet.

Jean.......

I'm glad I'm not the only one resisting another colonoscopy. As far as I am concerned when the specialist saw no abnormalities in my gut he should have taken a biopsy or three. I was very clear about my history and my pain - I feel everything I said was dismissed or perhaps it was more convenient to do a second one.

I know what I have and my partner agrees so I am self treating with diet and loads of help from everyone on this forum. I have to, my GP has never heard of MC.

[tex]

I wrote a long answer in reply to JFR on exactly what you have broadly outlined here. I deleted it before submitting because I thought it too controversial.

I did exactly the same thing earlier, because I hate to write such accusatory posts, and I realize that most physicians don't do that intentionally, but after I noticed that others might be thinking the same way, I toned it down a bit and posted it later. This certainly doesn't apply to all physicians, but it dang sure appears to be the case in many practices. However, I don't believe that the physicians are causing these problems. Hospitals especially, in the U. S., don't know when to stop padding the bill. But the big winners are the insurance companies and the pharmaceutical industry, because they are the ones currently dictating the rules of the game. It's a game in which physicians and patients are merely pawns, and hospitals are acting as referees.

Tex