I have had a slightly odd thing happen recently, which I will now relate. I mentioned on Facebook (more on this in a moment) that I had been referred for my first colonoscopy. You might well wonder why I would post such a thing on Facebook (this is already the moment, we are already there); and it is because, awhile back, I saw something about how one of the main reasons people die of colon cancer is that there is so much embarrassment/reluctance about colonoscopies; and that it can make an actual difference to THE WELL-BEING OF ALL HUMANKIND if people mention colonoscopies casually, the way they might mention their annual physicals or eye exams: like, it’s not embarrassing; like, why would anyone be embarrassed; like, this is a normal thing to do, your friends and family members are all doing it, it is normal and routine and not embarrassing.
And that is a theory that makes sense to me, a person who finds colonoscopies embarrassing and not at all in the same realm as eye exams—and yet who DOES want (“want”) to have one, because that is the age I am, and because I would prefer not to die of colon cancer. Plus, Edward has had MANY colonoscopies because of his Crohn’s disease, so I am at least familiarized with the process in that way, and it helps me to see/hear how casually–even ENTHUSIASTICALLY–his GI doctor treats the whole thing. His GI doctor does not seem grossed out; his GI doctor seems like he is glad to get a look behind the scenes.
Anyway, that’s why I mentioned it on Facebook: as a service to all humankind. And here is the slightly odd thing that happened: more than one person, and to be precise it was two people, separately reached out to inform me that I would not, and/or would not HAVE TO, be having a colonoscopy but instead would be doing the little kit where you take a sample and send it in to a lab. But. In my case I had said that I HAD BEEN referred for a colonoscopy. I did not say “I am doing the little kit.” (Which I have done, previous years.) And yet people were telling me I was not going to have to do what I was telling them I was going to have to do, and that I would be doing something else instead. It was odd.
Then I went in to work the next day, and my co-worker of approximately my same age was mentioning that she was going to have her first colonoscopy, and would soon be starting her prep, and I was all “WAHOO, HIGH-FIVE, COLONOSCOPY TWINS!!!”—and our mutual co-worker, who is half a dozen years older than us, informed us that she had never had a colonoscopy, and that all we really needed to do, without a family history of colon cancer, was the little sample kit where you send it off to a lab. But…my other co-worker and I have both been ACTUALLY SCHEDULED for ACTUAL COLONOSCOPIES by our ACTUAL DOCTORS. So…why is she telling us that we can instead send a sample to a lab? It was odd. I can’t think of another medical procedure where I have had this same reaction: the “Oh: you say this is going to happen, but I can tell you with confidence–though without evidence–that it will not happen” reaction.
That is so weird. I have had two? Three? Colonoscopies, and no one ever mentioned the other sample thing to me (though I have also done the sample thing, back when I had c-diff. The c-diff is why I have had more than the usual number of colonoscopies for a person my age)
It’s great that you’re mentioning it openly. It SHOULD be something we’re more open about. I have had two, along with gastroscopies! I’m due for both again in not very long. There’s some stuff that needs monitoring with me (nothing bad but it could become bad without being checked/dealt with fairly frequently). I do not like the prep, but as everyone else has said, the procedure itself is very easy. And I didn’t find the prep nearly as bad as it could’ve been, either.
But you’ve seen Edward go through it already – you know what it’ll be like. I hope it goes very smoothly for you.
People are very weird about these things, sheesh.
I’m happy to answer any questions if anyone has any.
I do not know why people who are not medical doctors speak with authority about medical issues, ever…and I am married to such a person. I do not think doctors are infallible, but…LORDY.
I had my first colonoscopy this fall and the prep was not fun but also nowhere as bad as I expected. The way my dr explained the full test with the prep and anesthesia is that if you do that, it’s good for 10 years, AND it catches much more cancer, earlier. The little kit you do at home does not involve anything unpleasant but it doesn’t catch the earliest cancers and you have to repeat the test more frequently.
These home tests are fairly new and I don’t think everyone knows they are an option, is my guess.
I wonder—could this be maybe a combo of these tests being new as well as some of the screening guidelines changing? I think I read not too long ago that the recommendations have been updated? So maybe these people were referred, but the gastro gave the test as an option? Still crazy for these people to act qualified about telling you what will happen!!
I wonder if these people have done the home test but secretly feel worried that maybe it’s not as good as the full colonoscopy and therefore they want to believe that everyone is doing the home test rather than they have chosen the inferior route. People really are weird about so many things.
My doctor told me I COULD do the home test but that they had a very high false positive rate and then you have to do a colonoscopy ANYWAY. So it’s not worth it., IMO, except if you are violently opposed to getting a colonoscopy. Which some folks are! But it’s weird that people are, like, insisting that you will be doing the home test.
My doctor told me that insurance will cover the colonoscopy 100%, but if I opt for the home kit and then I have to do the colonoscopy…insurance will only cover what they typically cover.
I suspect the reason people message you/tell you these stories is the mix of stigma surrounding colon issues and the generally bad name colonoscopies have for being an unpleasant process with an unpleasant prep beforehand.
I think people are probably trying to help. Like, ‘oh no! Don’t worry! There’s this much less invasive process and my doctor told me it’s totally fine to do that instead of the full colonoscopy! Save yourself now!’
Whereas in fact obviously there is still a time and a place for a colonoscopy and for lots of people it still will be the best option.
That IS weird! I suppose a colonoscopy does invoke a lot of fears for people. I put off my first one during the pandemic and then got it done last fall. When the doctor told me he’d removed 3 polyps(!) I was sure glad I’d followed through with it. I’m now on a schedule to get them done more frequently than every 10 years.
The colonoscopy recommendations have changed recently. It used to be any test is better than no test since people were avoiding colonoscopies. But colon cancer rates are on the rise so they lowered the age and have moved away from the kits.
With a strong family history of colon cancer I’ve had colonoscopies since I was 30. I don’t really get what all the fuss is about.
That is odd. I’m not sure why anyone would presume to know what was going on with your own medical history.
This is some kind of timing – my husband has a colonoscopy on Monday. He has had, I think, three. Maybe this is his third? Anyway, his father had colon cancer and if he had actually gone to a doctor more than once in 40 years, even after having lots of really gross symptoms that indicated a problem, he would probably NOT have colon cancer. He’d probably have had something small and pre-cancerous. As it was, his cancer was a giant grapefruit sized mound, and it was a huge deal and he had chemo and radiation and surgery and had a colostomy bag for the remainder of his life. So, a colonoscopy for my husband every five years or so.
The procedure itself is really no big deal but the prep, as you would know from Edward, is really the hard part.
I don’t know if you listen to the “Ologies” podcast, but the host recently had a colonoscopy and did a “ride along” for it. It was really interesting and I think would be super helpful to anyone who might need one in the future (which, let’s face it, is all of us.)
Our old health insurance actually gave us a rebate for colonoscopies, as in, it cost us zero dollars plus they sent us $250 if we had it done at a specific place. Our new insurance doesn’t do that but does cover the whole cost. I say that to note that yes, it’s a whole unpleasant thing but at least I don’t have to pay many dollars for it.
At my first one they found eight (8) polyps which alarmed me greatly but they were all benign. Now I have to go every year. (Prep is the wooooorst but at least I get a good nap.)
I don’t know why people would think they could tell you what you’re doing! That is odd. But people can be weird for sure, and especially about medical things.
My experience: I made an appointment for my first colonoscopy, after I turned 50, but on the prep day (before even starting the real prep) I got one of my awful migraines, with terrible pain and vomiting even a sip of water. It was horrible, and no way could I do the prep, so I cancelled the test. I put off rescheduling for a while, but finally did–and the exact same thing happened again! I get very few of those awful migraines, but wow. So my doctor asked me why I hadn’t had the test yet, and I explained what happened and that, although it had to be a coincidence, I just kept putting off rescheduling. She said I could try the Cologuard, so I did, and it came back clear, which bought me three years off. I’m due for it again this fall, so we’ll see how it goes. I know that I may need the real test at some point, but I’m skittish about it because of my experience.
In case “before even starting the real prep” meant “after I started not-eating but before starting the clean-you-out medication/drink” I would like to note that some people get migraines due to things like artificial sweeteners or specific food coloring agents or random ingredients in canned broth, so *if* you ate/drank something you normally wouldn’t eat/drink because of the colonoscopy ahead-of-the-prep rules (or *didn’t* have something, like coffee, that your body kind of relies on at this time), then that might do the trick migraine-wise.
Probably not! Probably you would have noticed! But I definitely laid in a stock of things I normally don’t eat/drink for colonoscopy prep and ate/drank them [canned broth! jello!] and fortunately I didn’t have a reaction to any of them, but I totally could have. And caffeine is an anti-migraine thing but I don’t remember if colonoscopies have a ban on coffee because I do not drink it. So. Maybe.
Interesting point! IIRC, I had some chicken broth from the cubes, which isn’t something I would normally have, and Jello, also not something I have regularly, so something in those certainly could have triggered it. Or not having coffee, though I’m not usually sensitive to caffeine. I think they told me I could have it, but not with any creamer in it, and I can’t drink black coffee, I mean I don’t want to..
I had migraine issues during mine, too! My migraines can be triggered by blood sugar wackiness and the prep is just one big blood sugar nightmare. Next time, I am going to take my migraine medication preventatively.
As someone with sensitive skin, something I wish I had been told before my first colonoscopy is that it’s useful for people with extra-sensitive skin to apply vaseline or A&D ointment or *something* to the anus and adjacent areas before and during prep so as to shield the sensitive skin from the acidic output of the colonoscopy prep.
Alas, I can figure out no non-awkward way of saying “anus.” I still do tell friends with sensitive skin who are having colonoscopies, because sometimes awkward is worth it, but… sigh.
It is really weird that people are saying you won’t have a colonoscopy. If you were talking about asking your doctor about a colonoscopy, maybe, but as a response to “I am having a colonoscopy” it is *really* weird but yes, people are weird (and especially, as a prior comment noted, about stuff where option A is more effective but more unpleasant than option B and where they went for option B).
These people seem not to be reading your posts very closely, hashtag Facebook. But I wonder if perhaps their experience was similar to mine — as a newly minted 45yo with no family history, my PCP said “okay time for a colonoscopy!” And then — only because I’d mentioned to her 20 seconds before that I have a lot of medical anxiety — added that I was a good candidate for the kit instead. If I hadn’t said that, I got the sense she would not have mentioned the kit, which I hadn’t known about before and wouldn’t have known to ask for. So maybe those people were trying to make sure you knew it was a possibility? If you had a Time Machine. Ha.
The only similar experience I can think of is pregnancy and birth, to be honest. So many people told me “here’s what’s going to happen” even when I knew that wasn’t what was going to happen at all, and exponentially more people told me when I was unsure what would happen.
Yes! I had very similar experiences from other people about my first in particular. And now I have three kids, and all three births were quite different (‘natural’ labour which lasted 3 days, natural labour for 8 hours then an emergency c-section, scheduled c-section without going into labour at all). It makes me marvel at how people think that their experience is exactly correct and right for everyone else.
My part in the PSA for colonoscopies is that there is a pill prep (https://www.ccalliance.org/blog/prevention/new-colonoscopy-prep-tablet-approved-fda) that you can take instead of the icky liquid prep. The prep is a lot of pills, so not helpful if you have issues swallowing them, but for me it was so much better than the liquid prep. I couldn’t keep that stuff down without an anti-nausea prescription.
Had to ask my GI specialist to prescribe it. He was a little iffy as he hadn’t had a patient use it before & warned me that if it didn’t result in a clean prep that I’d have to redo it. Said I was fine being a test subject for the prep and the alternative was not great as I had previously had incomplete preps due to vomiting the liquid prep. Pills went down fine; drinking the required amount of liquids was easy; prep was “complete;” will definitely do the pill prep in the future.
Other notes: get Desitin & apply it to your anus before the effects of the prep set in; this was a warning from my sister. Waiting until she “needed” it was not helpful for her.
If you have been considering it, go ahead and get a bidet; we have one and it + Desitin avoided all irritation issues.
Wearing a slip-on skirt was convenient for me during prep & the day of the procedure (lower level of clothing wrangling).
Next time I have a colonoscopy I’m going to ask for anti-nausea medicine. I had a hard time keeping the prep medication down (the pill version, especially the second round) although I still felt it’s effects. I fretted that I wouldn’t be able to do the procedure after going through the prep. It all worked out in the end.
I had expected to get the full colonoscopy since I’m 50 and my grandmother had died of colon cancer (which was melanoma, so I got hit with a double family-history-of at the same time). But oh no, my family doctor breezily reassured me that because my grandmother was 93 her disease didn’t count as family history because “Something or other is going to get you at that age!” and told me to do the mail-in sample.
I know several people whose lives have literally been saved by colonoscopies that discovered colon cancer (and these several people are all evangelists for routine colonoscopies now), so I was kind of dubious, but didn’t feel I had the option to press for the full exam.
I happen to be listening to a book called Outlive, which is about… living as long as you can, and based on it, I would press for the full exam. He has all of his patients have colonoscopies no later than age 40, and repeats them every 2-3 years, and that’s regardless of family risk.
Are you in Canada? Is the bar for screening exams different there? I seem to recall that at one point the UK did Pap smears much less frequently than the US (assuming someone was in the US AND had access to healthcare).
I’ve had the full colonoscopy twice and they found polyps both times, which means I will be getting the buttcam every five years until I age out of buttcams.
I would like to thank whoever it was on the bird app who said, in the matter of pre-procedure prep, “Remember: It’s never a fart.”* I pass this along to all my friends who are about to have their first colonoscopy. That, and the tip mentioned above to grease up with petroleum jelly before things get loose, because you will be very sore otherwise.
*I suspect the random person from Swistle’s story is going to tell me that some of the time, what I experienced actually was a fart.
Slim,
I am indeed in Canada. Perhaps it’s because our health care system is funded through taxes that the simpler/cheaper tests are recommended by our screening program? Even so though, family history does usually play a role: my mother has severe osteoporosis, so I was sent for a bone density scan at 50, and they don’t normally start until later.
I am in Canada too. It’s interesting how things are different everywhere. When I turned 50, my doctor had me send in a poo sample with the little kit and said depending on the results from that, may schedule a colonoscopy. But I have no family history, so there was nothing to take into account there.
This was very timely. I had my first colonoscopy yesterday. Knowing what I know now would have relieved some of my anxiety.
1) when they say to use the prep things come out “clear” They do not mean clear and colorless like water. They mean clear like “free of solids”. Knowing this would have saved me infinite anxiety.
2) I had a prep where I had to take half at 7 pm and half at 3 am (for a 7 am arrival for procedure). I really thought the 3 am could not be correct but I was, uh, using the restroom right up until we needed to leave. Do not sleep in on this.
3) Even if you are hooked up to the IV, they will very kindly help you to the bathroom right up until it is time to be wheeled down the hall. Everyone on staff was just the nicest and most briskly pleasant.
4) My instructions said you needed a trusted over 18 person to drive you (no uber or cab). They also warned twilight sedation means in rare cases you could have some vague memory of the procedure (my husband did). I was for some reason really worried about waking up and said so. They listened and were very kind. I was rolled into the room and told to roll on my side. I was kind of mortified because every person in the room was a woman (doctor, anesthesiologist, nurses, except the nurse near my bottom. That was my last thought and then I woke up in recovery. I apparently refused a wheelchair and was stumbling around the room so I’d say I had plenty of anesthesia and needed help to the car.
They found 3 polyps that are being tested now but don’t look cancerous per the doctor. I’m so glad I went . She said they find polyps in 40 percent of patients! Early detection and removal of polyps is an excellent way to prevent colon cancer and early detection is key in successful treatment of it. In high school, I watched my beloved grandfather die a horrible death from it (at only 65) and I am so so glad this is an option for me.