Colonoscopy Question

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DebE13
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Colonoscopy Question

Post by DebE13 »

I received a letter today from my son's GI that he is due for his colonoscopy. He was dx with PSC (liver disease) in 2011 and as part of that process he had a colonoscopy done, which came back clean. He is at a greater risk for developing Crohns so I understand that is under their watch but I don't feel comfortable with the idea of him having another one so soon with no GI symptoms/issues. I don't like the idea that problems could potentially be created by the process when he currently has none. He tested sensitive to gluten and dairy but has chosen not to modify his diet because he has no problems. :sad:

My dilemma is advising him what to do because he looks to me for how to proceed (he is 19). Am I way off base by thinking it is not necessary at this point in time? Colonoscopies have become so routine nowadays but it is still an invasive procedure. I understand they would like to see if anything has changed since the last one but if he does develop Crohns there is no way the doctors can prevent it by "catching it early", right? The best measure would be for him to eliminate gluten and dairy.

His labs are "good" for his condition and the meds he is taking to manage the puritis are working. He actually decreased the dose of rifampin to see if the itching could be suppressed with a lower dose since he is afraid that someday it may no longer work and has been successful so far.

Making health choices for myself is one thing but a wrong suggestion from me being uniformed could be very serious for him.

I'm on the three year plan due to polyps and even though I don't like it, it makes sense. This does not.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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tex
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Post by tex »

Deb wrote:I understand they would like to see if anything has changed since the last one but if he does develop Crohns there is no way the doctors can prevent it by "catching it early", right? The best measure would be for him to eliminate gluten and dairy.
I certainly agree with you. How long could anyone have an IBD and not be aware of it? The symptoms will be there. As long as they only prescribe drugs (and not diet changes), doctors have no way to treat anyone to prevent an IBD from developing. Currently, all they can do is to treat the symptoms after they develop. Have you ever heard of them treating anyone who didn't have clinical symptoms? IOW, if he has no symptoms, they wouldn't treat him anyway, even if his biopsies were diagnostic of an IBD. They're just curious, and they may even view him as a learning opportunity for their own benefit.

And I also agree with you that the best way for him to minimize his chances of developing an IBD would be to adopt a GF, DF diet, and to keep his vitamin D level well up in the safe range.

Overtesting (running tests that are unnecessary) is one of many reasons why health care in this country is too expensive, and why so many people are being treated for "pre" conditions that really shouldn't be treated. Treating for diseases that don't actually exist, such as "pre-hypertension" and "pre-diabetes" for example should be done by diet changes, not drugs. Those "diagnoses" and treatments are promoted by the drug companies, and they (and the doctors who "diagnose" them), are the only ones who benefit from such treatments. The patient would be far better off with diet changes, and no drugs.

But of course all this is just my opinion.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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DebE13
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Post by DebE13 »

I'm all for doing what is necessary but this just didn't fit.

I got a call today that his most recent labs showed elevation in his CA19-9 tumor markers since he is also at a higher risk of developing cancer of the bile ducts. The nurse who called didn't have record of this year's MRCP. It was quite alarming and put a damper on the day to have that thrown out there. The test isn't reliable so she wants their team of radiologists to review his scans. It is out of network so I need to make sure the pre-auth paperwork is completed so I don't get stuck with a bill that would normally be paid. Of course, I don't want any additional delays. :sad: None of this came from his GI in town but what I consider the experts about 2 1/2 hours away. It's scary when your hometown doc tells you their facility doesn't know much about the disease. Now I'm dealing with the people that deal with PSCers everyday and don't think twice about talking transplant. I have so much to learn.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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