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PSA: Don't skip your colonoscopy


Farrar
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A friend just died of colon cancer. Sadly, it was not a good death and she was in a lot of pain for a long time. I'm just heartbroken. She had skipped or put off her colonoscopy and kept urging others not to. So I'm urging everyone here not to skip it or put it off. It's impossible to know if that would have helped in her case, but it's definitely the case that she regretted not doing it.

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My brother died of colon cancer. By the time he was diagnosed it was too late, but his illness prompted the rest of us (siblings) to schedule colonoscopies, which saved my other brother's life because his was caught early and treatment was successful. Colon cancer is a terrible way to die, and one day of discomfort every 5-10 years is a small price to pay for peace of mind.

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Our good friend was diagnosed earlier this year - he's not even 50 yet. No family history, healthy, active guy. It's horrifying. They're doing what they can to treat him, but it doesn't look good right now. I'm so sorry for your losses @Farrar and @Corraleno.

Edited by AmandaVT
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Thanks for your message, Farrar.    Both dh and I have had them and dh needs one more frequently because of the results of the first one.  

His father f8ed of colon cancer, but he was 87 and it probably was secondary cancer spread from his initial prostate cancer a few years before.

It is so  very sad when people die when doing recommended medical tasks are just ignored.

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I am also sorry for your losses @Farrar and @Corraleno.  And I'm sorry about your friend, @AmandaVT.

Our neighbor had symptoms for a long time before finally seeking medical care.  By then it was too late and he died in his 40s with four kids.  It was so sad.  I know another woman who had her cancer caught by a screening colonoscopy and had treatment and her prognosis is very good.  

Great PSA, but sorry for the reason.

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For those who might be squeamish about a colonoscopy, the at home tests for colon cancer screening are considered good for people who are in “low risk” category. My medical provider is encouraging the at home tests because she says that even though the accuracy is lower than a colonoscopy, the compliance, or participation, rate is so much better.

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Mine was scheduled, but is now postponed indefinitely bc the hospitals are so full of covid and their staff overwhelmed. Many routine or non-emergent things are not happening. Our insurance limits which providers we can use. 

Edited by ScoutTN
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5 minutes ago, City Mouse said:

For those who might be squeamish about a colonoscopy, the at home tests for colon cancer screening are considered good for people who are in “low risk” category. My medical provider is encouraging the at home tests because she says that even though the accuracy is lower than a colonoscopy, the compliance, or participation, rate is so much better.

Does a doctor have to order it?

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1 hour ago, ScoutTN said:

Mine was scheduled, but is now postponed indefinitely bc the hospitals are so full of covid and their staff overwhelmed. Many routine or non-emergent things are not happening. Our insurance limits which providers we can use. 

You might ask your doctor about Cologuard or other in home test in the meantime.

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I agree.  Do NOT put it off.  One thing that makes it so much better (ok, it still isn't pleasant) is that they now have pills you can take instead of drinking the terrible liquid.  I just had mine 3 weeks ago.   I had to be on a low fiber diet for 5 days, a clear liquid diet the day before.  Then 5pm the night before I had to take 12 pills and drink water, then more more, and then more water.  From about 6-9pm I just stayed sitting.  It wasn't horrible as I had a book, y phone, etc.  Vaseline is your friend....use after each wipe 🙂

Then about 6am I had to take 12 more pills and water and water and water.  I was sitting from about 7-9am and that was it.

Test was super easy and quick.  I was in and out in under 2 hours.

Afterwards I wasn't very tired, but some people are.  My blood pressure was a bit low but I drank some electrolytes and ate pizza and  by the next day was 100%.

 

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I am so sorry for everyone's losses. I had one scheduled, but had to reschedule. I thought the new recommendation was age 45. My understanding was that a colonoscopy was superior to the at-home tests because a colonoscopy actually removes any polyps. I am not sure if I would trust the other tests. Does anyone have data comparing the two? I haven't done a deep dive.

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5 minutes ago, SeaConquest said:

I am so sorry for everyone's losses. I had one scheduled, but had to reschedule. I thought the new recommendation was age 45. My understanding was that a colonoscopy was superior to the at-home tests because a colonoscopy actually removes any polyps. I am not sure if I would trust the other tests. Does anyone have data comparing the two? I haven't done a deep dive.

Can't speak to a comparison of the 2 tests. 

I believe they now recommend 45 but most insurance won't cover it until 50. My grandfather died of colon cancer and my younger sister, recently turned 45, is trying to get her insurance to cover the test at 45 but they aren't budging. 

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Yes!  My mom put hers off and when she finally had it, she had to go right into emergency surgery within days.  Thankfully they were able to get all the cancer, but between the colostomy, chemo, and radiation effects, her life is very much permanently altered.

Because my mom had colon cancer, I am considered high risk and need a colonoscopy every 5 years.  I had my first at age 50 (a previous one was botched, but that's another story).  I need to schedule my next one in this upcoming year.  I don't plan on ever letting it slide.

Everyone thinks colonoscopies (including the prep) sound so scary and gross.  In my experience, they are really no big deal.  Don't be scared, just do it.  🙂

Edited by SKL
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5 minutes ago, Ordinary Shoes said:

Can't speak to a comparison of the 2 tests. 

I believe they now recommend 45 but most insurance won't cover it until 50. My grandfather died of colon cancer and my younger sister, recently turned 45, is trying to get her insurance to cover the test at 45 but they aren't budging. 

Huh. I would seriously appeal that all the way up. I know that I had to argue a bit with my Kaiser doc, but ultimately prevailed in getting the order put in. 

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3 minutes ago, SeaConquest said:

Huh. I would seriously appeal that all the way up. I know that I had to argue a bit with my Kaiser doc, but ultimately prevailed in getting the order put in. 

She's attempting to appeal. She's a physician so knows the science. 

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7 minutes ago, Ordinary Shoes said:

I believe they now recommend 45 but most insurance won't cover it until 50. My grandfather died of colon cancer and my younger sister, recently turned 45, is trying to get her insurance to cover the test at 45 but they aren't budging. 

For my first attempt (pre-age 50), I had to say I saw blood when going to the bathroom in order to be approved.  (A misleading statement perhaps, but I was a single mom with little kids, so too bad.)  And then the insurance company made a mistake and decided it was an "elective procedure," but I fought it and won.  [That first procedure was aborted, but I'm not gonna get into that here, because it's not relevant.]

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7 minutes ago, Ordinary Shoes said:

I believe they now recommend 45 but most insurance won't cover it until 50. My grandfather died of colon cancer and my younger sister, recently turned 45, is trying to get her insurance to cover the test at 45 but they aren't budging. 

That's so stupid and short sighted. My brothers were 47 and 49 when they were diagnosed; routine screening at 45 would have caught both cases at a stage when it would have been much cheeper and easier to treat — not to mention more survivable. 

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1 hour ago, Ottakee said:

I agree.  Do NOT put it off.  One thing that makes it so much better (ok, it still isn't pleasant) is that they now have pills you can take instead of drinking the terrible liquid.  I just had mine 3 weeks ago.   I had to be on a low fiber diet for 5 days, a clear liquid diet the day before.  Then 5pm the night before I had to take 12 pills and drink water, then more more, and then more water.  From about 6-9pm I just stayed sitting.  It wasn't horrible as I had a book, y phone, etc.  Vaseline is your friend....use after each wipe 🙂

Then about 6am I had to take 12 more pills and water and water and water.  I was sitting from about 7-9am and that was it.

Test was super easy and quick.  I was in and out in under 2 hours.

Afterwards I wasn't very tired, but some people are.  My blood pressure was a bit low but I drank some electrolytes and ate pizza and  by the next day was 100%.

 

**dont quote**

Thank you for giving these details. It’s the prep I’m worried  about, but not so much having to drink the stuff (though it’s really nice to hear that pills are an option), but I have some very uncomfortable prolapse issues and thromboses that flare easily, and I can’t even imagine what that kind of prep would do to me. Super freaked about that. I could see prep landing me in need for surgery.  So, I know I need to do it sometime, but I just don’t know how to get around it being super awful and landing me in a lot of pain. Ugh. 
 

**don’t quote**

28 minutes ago, SeaConquest said:

I am so sorry for everyone's losses. I had one scheduled, but had to reschedule. I thought the new recommendation was age 45. My understanding was that a colonoscopy was superior to the at-home tests because a colonoscopy actually removes any polyps. I am not sure if I would trust the other tests. Does anyone have data comparing the two? I haven't done a deep dive.

I’ve been looking it today, and it looks like the one that includes the DNA testing is around 90% for early stage. And more false positives than a colonoscopy. Plus, of course, it doesn’t have the advantage of removing polyps at the same time like a colonoscopy. Still, I’m thinking of using the Tele med service for Cologuard at this point until we’re out of this Delta wave (though I realize there’s a high likelihood for me of a false positive and then I will feel I need to get in pretty quick— but they probably won’t have any appointments until Delta subsides anyways). 

 

10 minutes ago, SeaConquest said:

Also, it looks like it's pretty easy to get a telemed rx for Cologuard (if you are 45+) if a colonoscopy is not an option with your provider.

https://www.cologuard.com/how-to-get-cologuard

 

Edited by KSera
Please don’t quote
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36 minutes ago, Ordinary Shoes said:

Can't speak to a comparison of the 2 tests. 

I believe they now recommend 45 but most insurance won't cover it until 50. My grandfather died of colon cancer and my younger sister, recently turned 45, is trying to get her insurance to cover the test at 45 but they aren't budging. 

My mother was diagnosed with colon cancer at 50, so the recommendation for first degree relatives is to start 10 years younger than age at diagnosis.  So I had my first at 40.  I had a repeat at 43 and will have another one at 48.  I did have to argue with insurance, but they did eventually come around on it because of the family history.  

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2 hours ago, ScoutTN said:

Mine was scheduled, but is now postponed indefinitely bc the hospitals are so full of covid and their staff overwhelmed. Many routine or non-emergent things are not happening. Our insurance limits which providers we can use. 

my husband got this weird self-screening kit in the mail from United Healthcare.  Its called a Fecal Immunochemical Test. https://medlineplus.gov/ency/patientinstructions/000704.htm

Can anyone speak to if this is a good second option for those who can't get in for a colonoscopy? ETA: I see a kit was mentioned upthread. I am not sure if this is the same thing.  

This thread is making me nervous. My dad has had several suspicious things removed, his uncle had colon cancer, and I am 48 and they have done nothing with me (yet). Maybe I should find out if I can get at least the test that my husband got. He just turned 50 so that is why I assume he got the kit. 

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2 hours ago, City Mouse said:

For those who might be squeamish about a colonoscopy, the at home tests for colon cancer screening are considered good for people who are in “low risk” category. My medical provider is encouraging the at home tests because she says that even though the accuracy is lower than a colonoscopy, the compliance, or participation, rate is so much better.

And you do them more often, every 3 years instead of every 10, to make up for that to some extent 

2 hours ago, KSera said:

Does a doctor have to order it?

In my experience, yes. The results have to go to a doctor regardless, but you may be able to just call your doctor and request it, rather than go in. 

2 hours ago, bookbard said:

In Australia, we don't have routine colonoscopies. Instead the government sends out at home tests to everyone aged 50 and above (in the post, and you post them back). 

That's genius. 

1 hour ago, NewnameC said:

No

Are you in the states? How do you get it without doctor's orders, and where do the results go? 

54 minutes ago, SeaConquest said:

I am so sorry for everyone's losses. I had one scheduled, but had to reschedule. I thought the new recommendation was age 45. My understanding was that a colonoscopy was superior to the at-home tests because a colonoscopy actually removes any polyps. I am not sure if I would trust the other tests. Does anyone have data comparing the two? I haven't done a deep dive. 

 I chose it because I react badly to anesthesia and because I have a history of weird things 'that never happen' happening to me in medical procedures, lol. The at-home test is repeated every three years instead of every ten for those reasons. 

If I had any reason to think I might have polyps, or if I had specific risk factors, that would make me more likely to choose the colonoscopy. 

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18 minutes ago, cintinative said:

my husband got this weird self-screening kit in the mail from United Healthcare.  Its called a Fecal Immunochemical Test. https://medlineplus.gov/ency/patientinstructions/000704.htm

Can anyone speak to if this is a good second option for those who can't get in for a colonoscopy? ETA: I see a kit was mentioned upthread. I am not sure if this is the same thing.  

This thread is making me nervous. My dad has had several suspicious things removed, his uncle had colon cancer, and I am 48 and they have done nothing with me (yet). Maybe I should find out if I can get at least the test that my husband got. He just turned 50 so that is why I assume he got the kit. 

This is what I read earlier about the FIT test:

“The FIT screening test has been in use for about 10 years. It should be repeated annually in case the cancer or polyp isn’t bleeding at the time of the test. (Colonoscopy is recommended once every 10 years for low-risk patients.) The FIT test detects cancer with 79% accuracy, with about 5% false positive results (suggesting cancer where none exists), which warrant a colonoscopy for further testing.”

https://www.health.harvard.edu/blog/just-do-it-yourself-at-home-colorectal-cancer-screening-201903121826
 

It seems less accurate than some of the other at home options, but lower rates of false positives (the cynic in me thinks that’s why the insurance company would pick this one—it would be less likely to trigger more expensive follow up). 

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9 minutes ago, cintinative said:

my husband got this weird self-screening kit in the mail from United Healthcare.  Its called a Fecal Immunochemical Test. https://medlineplus.gov/ency/patientinstructions/000704.htm

Can anyone speak to if this is a good second option for those who can't get in for a colonoscopy? ETA: I see a kit was mentioned upthread. I am not sure if this is the same thing.  

This thread is making me nervous. My dad has had several suspicious things removed, his uncle had colon cancer, and I am 48 and they have done nothing with me (yet). Maybe I should find out if I can get at least the test that my husband got. He just turned 50 so that is why I assume he got the kit. 

It is checking for blood in the feces only, it does not do the DNA detection like Cologuard. It's a very easy test and you do it yearly, but I personally would choose Cologuard if possible (even though it's harder to poop in a box than you might imagine). I just prefer the idea of checking for DNA markers rather than checking for blood. 

Just like curriculum, the most effective poop test is the one you will actually use 😄

Colon and rectal cancers tend to grow slowly, so people should get checked as  recommended but I wouldn't worry too much otherwise. Ask your,  doctor what is covered for you. I know Cologuard is covered by insurance on lots of plans at 45 (but not all), I don't know about the other test. 

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I live in the US. I had a colorguard test last year.  I don’t have a primary doctor and I simply ordered colorguard through its website.
 

PWNHealth

help@cologuardtest.pwnhealth.com
+1 (718) 210-9716
The results were sent to me via email (actually a link to see the results was sent.

 

 Here is what I received when I ordered the test. I’m guessing I may have spoken to someone when I ordered or that I had to answer questions online to make sure I was a good candidate. However, it has been a long year, and I don’t remember those details.

 

Order N0P7SYBK2679P is confirmed! We are glad that you have chosen to take this next step in your healthcare and wellness journey.

 

Next steps -

  • Prepare for the test

Click the link below to access your order and review the pre-test instructions. If you have any questions, contact the PWNHealth Care Coordination Team at +1 (718) 210-9716 orhelp@cologuardtest.pwnhealth.com.

 
  • Receive, complete and return your test kit

Please expect communication from Exact Sciences with further instructions.

 

 

 

 

 

Edited by NewnameC
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I'll chime in here and another voice to urge people to get their colonoscopy.  My dad had colon cancer.  Due to some complication with the surgery, he suffered with gangrene at the reattachment site and then ended up with the colostomy they were trying to avoid.  My husband has had 2 colonoscopies and they removed precancerous polyps both times.  I knew I needed to get it done but was scared of the prep.  While I wasn't looking forward to the massive amounts of liquid I would need to drink, I was more worried about getting hypoglycemia from fasting and not being able to have the procedure. 

The liquid wasn't bad other than the amount.  They had me use Crystal Light (lemon) for flavor.  So, I used a straw for drinking which seemed to help and I set timers to help me get down what I needed to.  I also used diaper cream to prevent discomfort.   When things got moving, I brought a table into the bathroom and streamed some shows to keep my mind off of things.  The next morning, I wasn't shaky from low blood sugar and the procedure went well.  I have to say when I came out of anesthesia, that was the best sleep I ever had.  Fortunately, everything was clear so I don't have to go back for 5 years.  

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I am so sorry for your losses @Farrar @Corraleno @AmandaVT

I put mine off for years and not for any particular reason. I just kept saying I'd make an appointment and never did. Around this time last year I ended up in ER with diverticulitis. It was easily treated at home but when I went to the gastoenterolgist he was pretty upset at me when he found out I never had one (I'm well past the age for a baseline colonoscopy) and insisted I make the appointment before leaving his office. I'm glad I did as it wasn't bad at all. Thankfully all was fine and he said I don't need another until 10 years. The prep was worse than the procedure. 

 

1 hour ago, Ottakee said:

One thing that makes it so much better (ok, it still isn't pleasant) is that they now have pills you can take instead of drinking the terrible liquid.  I just had mine 3 weeks ago.   I had to be on a low fiber diet for 5 days, a clear liquid diet the day before.  Then 5pm the night before I had to take 12 pills and drink water, then more more, and then more water.  From about 6-9pm I just stayed sitting.  It wasn't horrible as I had a book, y phone, etc.  Vaseline is your friend....use after each wipe 🙂

Then about 6am I had to take 12 more pills and water and water and water.  I was sitting from about 7-9am and that was it.

 

 

Ugh! I wish my doctor had ordered pills. The liquid I had to take was the worst. If I'm not a super taster I'm close or maybe I just have a quirk about how things taste. Dh tasted it though and said his was nothing like that, his wasn't bad at all, so it wasn't just me and my sensitive taste. Mine was so bad I was forcing down that last bit of the final dose and thought I was going to vomit it back up. I did have to do the low fiber and clear liquid diet before drinking the stuff but I didn't find that to be a problem. Oh, and based on the time my procedure was scheduled, I was up at 2am drinking that awful stuff while the rest of the household was sound asleep. 

Do schedule one if it's time. Ask your doctor for pills or liquid that isn't so bad, but even if you have to drink the awful stuff like I did, do it. The peace of mind if you're fine or the early treatment if you have issues is absolutely worth it.

 

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19 minutes ago, dirty ethel rackham said:

I'll chime in here and another voice to urge people to get their colonoscopy.  My dad had colon cancer.  Due to some complication with the surgery, he suffered with gangrene at the reattachment site and then ended up with the colostomy they were trying to avoid.  My husband has had 2 colonoscopies and they removed precancerous polyps both times.  I knew I needed to get it done but was scared of the prep.  While I wasn't looking forward to the massive amounts of liquid I would need to drink, I was more worried about getting hypoglycemia from fasting and not being able to have the procedure. 

The liquid wasn't bad other than the amount.  They had me use Crystal Light (lemon) for flavor.  So, I used a straw for drinking which seemed to help and I set timers to help me get down what I needed to.  I also used diaper cream to prevent discomfort.   When things got moving, I brought a table into the bathroom and streamed some shows to keep my mind off of things.  The next morning, I wasn't shaky from low blood sugar and the procedure went well.  I have to say when I came out of anesthesia, that was the best sleep I ever had.  Fortunately, everything was clear so I don't have to go back for 5 years.  

How long before the procedure do you stop drinking? I just realized the sheer amount of liquid is another issue for me, as I usually have to restrict fluids before appointments and things like that due to my bladder being fairly dysfunctional particularly under stressful circumstances. 

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I’m so sorry for people’s losses.  I just the procedure within the last two weeks.  The prep was spread across three days with pills and then lots of liquid and miralax and magnesium citrate.  It wasn’t pleasant but wasn’t awful.  I’m glad I did it.

 

DH had one a few years ago and the gastro doctor told him if he has a brother, he needs to have one.  BIL is well over 50 but won’t get one.  DH gets them on schedule.  I worry and pray for BIL.  

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45 minutes ago, footballmom said:

KSera, for my timing, I had to start the last of the liquids at midnight finish drinking by 1am.  Nothing else until after the procedure.  I left my house at 7:30am

Do you take something sedating the morning of, or not until they give it to you via IV before the procedure? (I'm guessing it's IV sedation?)

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8 minutes ago, KSera said:

Do you take something sedating the morning of, or not until they give it to you via IV before the procedure? (I'm guessing it's IV sedation?)

I've had 3 colonoscopies and was never given anything sedating until right before the procedure.  I usually had to drink part of the prep early in the morning (3:30-am-ish) as well.  

 

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Honestly the prep did not bother me at all, either time.  It didn't taste that bad (my mix was Gatorade), and I didn't ever have to camp out on the toilet.  Not sure if that is unusual or not.

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2 minutes ago, SKL said:

Honestly the prep did not bother me at all, either time.  It didn't taste that bad (my mix was Gatorade), and I didn't ever have to camp out on the toilet.  Not sure if that is unusual or not.

And you were cleaned out enough for them to have a clear view? It seems to me like camping on the toilet would be a necessary aspect of the whole thing or it hadn't worked. Though I much prefer the thought of doing it your way.

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3 minutes ago, KSera said:

And you were cleaned out enough for them to have a clear view? It seems to me like camping on the toilet would be a necessary aspect of the whole thing or it hadn't worked. Though I much prefer the thought of doing it your way.

Yes, the doc said it was clear.

Not saying I never went to the bathroom - I did, plenty - but it was never an emergency and I didn't have to just sit there and let things happen.  I also didn't have to use vaseline or whatever.

Is it just me who can't sit that long on the pot without stiffness / numbness / pain?  (Is that TMI???)

Edited by SKL
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I've had two colonoscopies, both using the Gatorade/Miralax prep. I never had to camp out on the toilet. Several trips--yes. But nowhere near needing to nest in the bathroom. Neither has DH (he's also had two). The amount of liquid is the biggest problem for me. I came very close to fainting in the bathroom around 11:30 p.m. last time, and I'm positive it was some weird reaction to drinking so much. 

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I will say that part of my camping out there was sorta a choice.  I easily could have gotten up and moved around some but it was just easier.....and that way my family didn't bug me at all😄

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I read an article about a woman whose insurance company wouldn't cover the colonoscopy she had following suspicious results from a Cologuard test.  Usually, a colonoscopy is a screening test that's covered 100% by one's insurance company.  The other kind is diagnostic (like that second-look mammogram) and is subject to deductibles.

YMMV, but it's something to keep in mind.

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1 hour ago, SKL said:

Yes, the doc said it was clear.

Not saying I never went to the bathroom - I did, plenty - but it was never an emergency and I didn't have to just sit there and let things happen.  I also didn't have to use vaseline or whatever.

Is it just me who can't sit that long on the pot without stiffness / numbness / pain?  (Is that TMI???)

I did my first colonoscopy last year (at 47 due to everyone in my family of origin having every kind of cancer) and I also did a liquid prep and didn't have to live on the toilet. Clean as a whistle they said. I'll go back in five years. 

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So sorry for your loss and all the others who have had such sadness. 

But thank you for the PSA and to everyone who is nervous- it is not that bad. It is not fun but not painful at all; just not fun. I have had way worse nights in my life. Just get it scheduled! 😀😀

 

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17 hours ago, Ottakee said:

I will say that part of my camping out there was sorta a choice.  I easily could have gotten up and moved around some but it was just easier.....and that way my family didn't bug me at all😄

Same here.  It wasn't for hours or anything like that.  But, due to my pelvic floor problems from a childbirth injury and subsequent surgery gone wrong, it was just easier to camp out there for a while when I felt I needed to.   

I had IV sedation right before the procedure.  While the prep wasn't fun, it wasn't nearly as bad as I thought it was going to be.  I'm not afraid to get my next one (I'm on the 5 year plan due to family history.)  

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I had my first one a couple weeks ago. The prep was unpleasant, but not at bad as I expected.
 

I took 3 Dulcolax at 08:00 and then 3 more at 09:00. Clear liquids and water all day. One 10 oz bottle of magnesium citrate at 4 PM. Another at 5:30 PM. Clear liquids and water until bedtime.

 
Procedure at 09:00 next morning and home eating tacos by lunch. Found a baby polyp. Removed it. Benign. 

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23 hours ago, SeaConquest said:

I am so sorry for everyone's losses. I had one scheduled, but had to reschedule. I thought the new recommendation was age 45. My understanding was that a colonoscopy was superior to the at-home tests because a colonoscopy actually removes any polyps. I am not sure if I would trust the other tests. Does anyone have data comparing the two? I haven't done a deep dive.

I'm over 45 and my doctor has not recommended it yet

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On 8/29/2021 at 2:09 PM, City Mouse said:

For those who might be squeamish about a colonoscopy, the at home tests for colon cancer screening are considered good for people who are in “low risk” category. My medical provider is encouraging the at home tests because she says that even though the accuracy is lower than a colonoscopy, the compliance, or participation, rate is so much better.

We were told not to do these. If you get a false positive, which often happens, you can never get a regular diagnostic colon screening again. That is the kind most insurance companies cover, so you could be paying for colonoscopies from then on. 

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