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FIT and Cologuard: Conflicting Results - CT Colonography Results

Summer91
Posts: 11
Joined: May 2019

Hi!  It was suggested that I start a new thread on this topic so that my post would not be lost.  So glad I found this discussion board.  History:  I have had several bouts of IBS iover my adult life.  Typical symtoms - bloating, occassional cramping, sometimes diarrhea and sometimes constipation, 'noisy' GI tract, etc. but never any evidence of blood.  Diet seems to be the main contributor.  If I stick with lean proteins, fresh fruits & veggies, minimize processed foods, the symptoms go away. 

Starting several months ago,  the symptoms returned.  Over the past year, I started taking canned soup to work for lunch, added a snack almost every day from the vending machine, and my husband began relying on making a pasta dish for dinner several times a week..  In others words, a big increase in processed foods.    I went to my primary care doctor as the symptoms seemed more extreme than what I remember from about 10 years ago.  She suggested the Stanford FODMAP diet, which is basically gluten-free, lactose-free, low sugar, low fiber.  Trust me, the list of foods you need to avoid is much longer than the list of foods you can eat!  If I adhere strictly to this diet, the IBS symtoms are minimized greatly.

Before I saw the doctor, I also ordered a FIT test from Letsgetchecked.com.  The results of that test arrived after I saw my doctor and were negative.  The doctor also wanted me to take the Cologuard test, so I agreed, even though everything I have ever read about this test indicates that it is not the silver bullet for screening.  The test came back positive!  From the papers I have read, Cologuard has a false postive rate of 13% and FIT has a false positive rate of 5%.  I realize the two tests are focused on different markers but I still find the conflict in results bizarre.  So, now I have to get a colonoscopy for peace of mind and I have to find a provider who has experience doing this exam, sedation-free (I experience longlasting memory lapses with any sedative and I need my brain to earn a living).  sigh  So far, I have not found a doctor in my area that will do sedation-free - which, by the way, is the norm in Europe - so am looking at the CT colonography.  My health insurance provider, United Health Care, has a very interesting document on colonography:  https://www.uhcprovider.com/content/dam/provider/docs/public/policies/comm-medical-drug/computed-tomographic-colonography.pdf 

Any else ever experience conflicting test results?  Any thoughts about colonography?

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

It really isn't the happening place, but you find yourself here, and we will help you all we can. 

I am sorry that you have a reaction to sedation. Have you had Propofol? That seems to be the one they like to use now, and I hear it is very effective.  I have had a colonoscopy without sedation and can tell you, that I would not do it again. It was not at all comfortable, thought it wasn't exactly painful either. I enjoyed - to a point - watching the screen and asking questions, but when they pump the gas in, it gets extremely uncomfortable; but, if you have to have one sedation free, its not the end of the world, either. 

I started to read the information in the link you provided, because I use UHC and ended up paying over $1.300 for my husbands colonoscopy last week.  I confess, I got a little lost with all the medical jargon and gave up, but thank you for the link.

I don't recall anyone here mentioning having a colongraphy, so I will wait with you for replies on that. 

I do so hope they don't find anything wrong, of course, and that our meeting here will be brief, and you can go on with the rest of your life.  

I do think that it is wise to go ahead and get a colonoscopy or colongrapny, whichever one you decide on. 

I know I have not been any help with your decision, but I just wanted to welcome you, and rattle on a bit, as I am want to do. 

Tru

Canadian Sandy's picture
Canadian Sandy
Posts: 493
Joined: Jul 2016

I have had a colonography as the tumour was blocking my colon. Everything is the same except they can’t remove anything. No sedation needed.

Annabelle41415's picture
Annabelle41415
Posts: 6184
Joined: Feb 2009

Actually I've never heard of it and mine was always a colonoscopy with propofol.  I'm not familiar with practice in Europe if that is where you are located.  People have stated both ways the inaccuracy of those type of tests but it is always good to follow up with a regular colonoscopy especially if you have had a positive reading.  Wishing you the best of luck finding a doctor that will adhere to your wishes.  Welcome to the board and hope we can help you further if you need it.

Kim

Canadian Sandy's picture
Canadian Sandy
Posts: 493
Joined: Jul 2016

It’s also called a virtual colonoscopy.....done by ct scan.

Summer91
Posts: 11
Joined: May 2019

Thanks, all, for the thoughts!  Actually, propofol is the sedative that gave me the the most severe adverse memory issues.  I have had issues with various types of anesthesia over the years so I am very cautious about any of these drugs.  I now have a consult appointment with a doctor to see about a sedation-free colonoscopy but the first available date is at the end of June.  I will also pursue the ‘virtual’ colonoscopy avenue to see if I can be seen sooner.  I will keep folks posted!

Tucsonjj
Posts: 5
Joined: May 2019

I am in the same "predicament" as you... negative FIT, positive Cologuard.  I did Cologuard first.  I called Cologuard and asked for the specific results... they refused... I said at least tell me which of your two tests came back positive... they again refused... I find this to be VERY suspicious... what possible reason could thy have for withholding this valuable info???  Made me very angry. 

Now, let's consider Cologuard's admitted 13% false positives... since this number includes BOTH the Fecal blood test and the very poorly described and little understood "DNA" test... consider this... a false pos on the fecal blood test is relatively rare... very rare... so... wouldn't that leave the DNA test holding the "false positive bag"???  IF you examined the false pos rate on ONLY the "DNA" test (50% of total)... instead of the total tests... the REAL false positive rate for the "DNA" test would NOT be 13%... it would be HUGE!!!  I think Cologuard may well be a SCAM.   Am I concerned by the Pos Cologuard test... of course, but only somewhat.  I do not know if I will do a colonoscopy or not, as they ARE dangerous, period!  Current plan is to do a FIT test every 6 months... I think that will give me enough margin of safety...

Watch all three in this series:  https://www.youtube.com/watch?v=woREV5D1DLQ

I would pass on the colonography... gives you a ton of radiation, and they stick an instrument up your backside... and if anything found... you have to get a colonoscopy!  Why not cut out the middleman, so to speak, and just have the colonoscopy?

 

Summer91
Posts: 11
Joined: May 2019

I am scheduled for a "virtual" colonoscopy on June 18.  The prep is considered a dry prep as they do not want a lot of fluid remaining in the colon so less icky liquid to ingest.  As I have never in my life taken a laxative, this experience should be very interesting!  Also, the colon is partially inflated for the CT scan but not to the extent required in a regular colonoscopy.  Additionally, carbon dioxide (CO2) is used instead of air as CO2 is absorbed by the body, thus causing less bloating and pain.

I am now being told that there are other probable causes for my GI woes - small intestinal bacterial overgorwth (SIBO), a possible neurological condition associated with a fractured sacrum (upper part of tailbone) that I sustained when I tried to ride out a bucking horse or colitis.  My primary care doctor does not seem to be that concerned about the positive Cologuard result, due to the high percentage of false positives and a negative FIT.  But she insists on having me do some sort of follow up.  I will keep this group posted.

Annabelle41415's picture
Annabelle41415
Posts: 6184
Joined: Feb 2009

Well your virtual colonoscopy sounds very interesting.  Hoping that the other causes you listed will be the problem.  It's good that you are following through with trying to figure out what is going on though.  It's important, especially when having symptoms.  Wishing you well.

Kim

EndoRN1985
Posts: 17
Joined: Jun 2019

Hey, as an endoscopy nurse, I would skip all of that and just go for a colonoscopy. It is far more sensitive to mucosal changes, whether polyps, colitis, diverticulosis, etc. And, of course, if anything is found on the CT, you have to get a colonoscopy anyway. Newer guidelines suggest starting first screening colonoscopies at 45, so if you're getting close to 50, it's almost time anyway.

 

Andrew

Summer91
Posts: 11
Joined: May 2019

Unfortunately, I have adverse reactions to sedation - memory lapses for days afterwards - so that is why I am going to virtual route first.  I do have a consultation appointment with a gastro doctor scheduled for the end of the month, in case a optical colonoscopy is needed.  Supposedly, this doctor will consider doing the procedure w/o sedation. 

EndoRN1985
Posts: 17
Joined: Jun 2019

It's possible you could request it be done with propofol, which doesn't have the same effect as midazolam. Alternatively, as you mentioned, you could do it without sedation. I had my colonoscopy without sedation, and it wasnt too bad. I had to roll on my back, apply counter pressure to myself and just breathe through some cramping. We see it done fairly often, and most people tolerate it pretty well! 

Summer91
Posts: 11
Joined: May 2019

Believe it or not, propofol is the worse for giving me memory lapses.  As I depend on my brain to make a living (scientist), I am not going to risk having permanent damage.  I have had cataract removal and lens replacement w/o sedation as well as total hip joint replacement (only had a spinal block).  And, I will say, the total hip replacement was one very loud surgery! Smile

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I've watched a hip reolacement and I can't imagine being awake and having it done to me.  

CRAZY! 

Tru

Annabelle41415's picture
Annabelle41415
Posts: 6184
Joined: Feb 2009

Back in 2008 when my first colonoscopy was done they used the "twilight medication" and that didn't work on me and was awake through the whole procedure so yes this can be done without it, it's just very uncomfortable.  Some medications work for some, while others don't respond at all.  Propofol worked wonders on me but I'm sorry it doesn't work for you.

Kim

Summer91
Posts: 11
Joined: May 2019

All,

I had the CT Colonography (virtual colonoscopy) procedure this morning.  The scan itself took a total of 20 minutes, including getting undressed and then redressed, but it took me 40 minutes to find a parking space!  The colon is inflated using CO2, which gave me a feeling of fullness but no pain.  The technician said they use CO2 because is absorbed by the body quickly and causes minimal discomfort.  The downside is that because of the high aborption factor, the CO2 is constantly being administered so not sure how this would work in a regular colonoscopy.  When I know my results, maybe by Friday, I will post again.

 

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I'm glad the procedure went well and quickly. And parking is always a pain, so my sympathies there. 

Looking forward to you coming back with good news, so we can say our goodbyes.  Yeah, this is the forum where we are grateful when folks come back and say 'Sayonara'.

Tru

Summer91
Posts: 11
Joined: May 2019

All,

I received my results from the CT Colonography test (virtual colonoscopy) yesterday afternoon.  No polyps or masses observed; evidence of diverticulitis, which is common in people with IBS and with advancing age; September 2018 fractures to sacrum and left pelvis completely healed; no outstanding pathology beyond the colon.  The one alert is that there was a spot in my lower rectum that was tagged as poop so I need to get that checked to make sure the poop is not masking something.  That should be a relatively easy check and I will keep folks posted.

 

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