I had a just-in-time colonoscopy but it took six months between knowing something was wrong, convincing the GP that something was wrong and it wasn’t just me being fat, getting the appointment with the Gastro, and finding out hey so glad you called we just pulled out some cancer.
My mother, a colon cancer survivor, always said that if everyone who participated in a “cancer walk” would commit instead to drive a person to and from their procedure, more people would be saved, since that can be a huge barrier and very awkward ask.
About two and a half years ago my partner started experiencing some blood in his stool. Doctor told him it was likely hemorrhoids, not to worry. There was no follow up. The bleeding came and went and my partner has a history of getting hemorrhoids, so we accepted that. But then it kept happening. So finally in early 2020 we were able to convince his primary care doc to refer him for a colonoscopy. Insurance wouldn’t cover it solely because of his age (it was about $1200 out of pocket), nevermind the fact that his mother had been diagnosed with colorectal cancer about six months earlier.
Then the pandemic hit, and his colonoscopy was rescheduled. I finally forced the issue to get it back on the books. Sure enough, they found cancer, and after some scans they found it had moved to the liver as well. Stage 4.
In the past two years he has been through pelvic radiation, chemo, liver resection, more chemo, low anterior resection and ostomy, and ostomy reversal. His last scan, in December, was clean.
Don’t ever let anyone, whether they have a degree or not, downplay something in your body that you know isn’t right. And honestly, it’s ok to be a pain in the ass (ha!) to get the medical care you need. In hindsight, I wish I had worried less about being nice and trusting and had forced the issue from the beginning. Our healthcare system tends to be adversarial, putting up multiple roadblocks to care. You really have to get comfortable asserting yourself, because no one knows what’s going on in your body better than you do.
Oh! The best tip I got: If you have access to any Vietnamese restaurants in your area (or are willing to make it yourself), buy some pho, strain it, and feast on the broth during the "clear liquids only" portion of the prep. WAY better than plain old broth!
My mother died at 59 (the age I’ll be in a month and a half) of colon cancer, so I’ve been getting them for years. One year, there was a narrowing of my colon and they couldn’t see the upper part, so I had to have a barium enema. While I was awake, a thick liquid was pumped into my colon as I laid on an X-ray table. I then had to turn this way and that so they could get good pictures. You don’t know uncomfortable until you have to keep a tube in your, you know, while your colon is stuffed full, and the doctor is saying “twist a little more to the left.”
But wait! There’s more! They still couldn’t get the picture they wanted, so they asked me to get up from the table and walk across the room, tube and all, in order to get the picture with me standing up. At that point all I could do was laugh. It was ridiculous. After it was over I loudly eliminated as much of the barium as I could, but I knew it wasn’t all.
Midway through the long drive home - there was no anesthesia so I hadn’t needed a driver - I knew I wasn’t going to make it. I had to stop at a grocery store and use the bathroom there. Judging from the sounds of the first trip to the bathroom I knew there would be no courtesy flush that could mask the gaseous explosions that were to come, so I just made up my mind not to care. I was in another part of town, and I would never see these people again.
I became a woman that day. First, by laughing instead of being mortified by walking bare assed across a room with a tube sticking out of my butt. Second, by not caring that I had massive farts in a public bathroom. In summation, getting a colonoscopy can be good for you in more ways than one. The end.
The worst part for me was when I remembered that, upon emerging from the sedation, I was *desperate* to communicate to the staff that I knew they had been role-playing "Sex and the City" during the procedure, and that I was on board because I happened to be rewatching it.
They were doing no such thing, of course. OR WERE THEY??? I will never know.
More important: Thank you for this. I am that 45-year-old friend who is telling all of her 45-year-old friends to just do this already and that it's genuinely not all that bad, just mildly unpleasant but also kind of interesting.
This is the reminder I needed to get that damn appointment scheduled. My husband has gotten two due to family history. He’s hangry before and loopy afterward where he eats and then passes out on the couch for a few hours.
Since I used to have gross stomach issues, “poopy death” killed me! 😂😂😂For anyone living that life, get a bidet if you can - even a squeeze bottle will help. That burst of water stops the burn so much.
Thank you so much for this, as a person with Crohn’s I consider myself a colonoscopy pro and my experiences have been pretty much the same as yours. I’m extraordinarily privileged to have great health care that makes frequent low cost colonoscopies possible.
One thing I’ve realized recently is that because we don’t as a society talk about poop, knowing what occult blood in your stool looks like is not something the majority of people would be aware of. So let’s take this conversation up another notch!
Fresh blood is obvious, alarming and yes sometimes just hemorrhoids or fissures but also sometimes a signifier that something way more serious like a GI disease or cancer is going on. Occult blood is not as obvious. Your stool turns a darker than normal color because the place that is bleeding is further up than your rectum and by the time it evacuates it’s changed color from fresh to dried. So if you have noticed your poop is consistently darker and it does not correlate to a diet change (like iron supplements or iron rich food intake) that is also something to bring up with your doctor.
Here’s hoping the next ten years of medical advancement make colonoscopies even easier!
Thank you for this awesome, detailed recounting of your experience! It's really helpful as I get ready for my first colonoscopy. And now I'd like to offer a PSA to all: NEVER, EVER opt for the cologuard home test instead of having a full-on colonoscopy. Because my cologuard result was positive, my upcoming followup colonoscopy is coded as being diagnostic, so instead of a $60 copay, it'll cost $3,060. And cologuard has a lot of false positives, apparently. What a freaking racket.
This is so great. Can someone do this for a mammogram? I have one next month and I’ve rescheduled twice because I’m terrified. I saw a tweet that said the two most painful experience a woman has had that were described as “uncomfortable” were getting her IUD and a mammogram, and as someone who has a high pain tolerance and sobbed throughout my IUD process, I’m terrified to get a mammogram.
Colonoscopies that are truly preventative screening - something you are doing on a recommended schedule when nothing is wrong, and the test confirms that nothing is wrong - should be treated as preventative and have ZERO COST (an ACA rule). If there is a polyp that is biopsied and it turns out to be benign, it should still be treated as preventative and no cost.
If a colonoscopy is diagnostic (eg: being done to diagnose something that's wrong), there will be a cost... typical copay, deductible, coinsurance.
If you are getting preventative screening services and end up getting a big bill, reach out to the billing department. It's likely because they used the wrong codes, and is something they need to correct.
I became a paid subscriber just to join this conversation! (Also, because these essays are great.) I have been getting colonoscopies for 20 years, because my brother got colon cancer at a crazy young age. He has been absolutely fine ever since, but every three years, it’s time for the prep. The actual procedure is much, much easier than it once was. I stay awake (I ask for “twilight” anesthesia) and watch and chat with the staff. It’s absolutely fascinating. As for the prep, I start fasting and clear liquids 48 hours before. That makes a huge difference in bathroom trips. Jello, ice pops, apple juice, clear broth - the pho idea is great - and ginger ale work best for me. Definitely chill the prep. You can apportion it in one of those exercise bottles with ounces marked on it so you aren’t daunted by how much there is to drink. Clear your calendar, start the prep at noon, and if you have early fasted, you should be clean by evening. My doctor told me the medical team complimented me in their writeup for my clean insides, so my system seems to work. Also, don’t overdo eating right after. Your system is churned up, and I found food shoots right through me. Crank it up gradually. And don’t drink alcohol unless you want to get drunk fast.
So many thought on this post. was diagnosed with Crohn's disease at 34, and over the last 25 years have had at least 15 colonoscopies (lost count!). I continually refine my prep (I now do a whole container of Miralax + a few Dulcolax pills, plus pretty much go liquid diet two days in advance, but this is with my doctor's agreement). I'm lucky to have access to great healthcare (Boston, yo) and although it's an annoying part of having my condition, I'm grateful for that.
Bottom line: Listen to Anne. Get the test. A couple of days of (slightly embarrassing) discomfort is way better than a late diagnosis of a potentially fatal cancer.
The tip I have is that you might get really cold after drinking so much of the prep if you refrigerate it. I needed more blankets to sleep the night before the procedure.
Thank you for normalizing this. I also really wish the medical community would really think about their escort rules. Because for instance does the person really need to stay onsite all day? Can someone just pick you up? Should you just not drive meaning a bus or subway or Uber is ok? Are you ok on the bus/subway/ Uber with an escort? If you don’t have an obvious person who drives this a much bigger barrier than I think most doctors realize. And I think most doctors don’t even really know there own facility rules. Or that anyone has really thought about why the rules are the rules.
Parents if you have a single friend who is an auntie or uncle to your kids, helps drive them places and you wonder what you can do in return consider saying “if you ever have a minor procedure that requires some sedation and an adult to take you home, please ask, we’ll do our best.” Only if you actually mean it and your work would let you.
Since COVID had me essentially dropped off outside the hospital in a wheelchair with a very badly sprained ankle and a newly reconstructed elbow for my partner to load into an Uber. I’m highly skeptical that he needs to be onsite for an entire colonoscopy where I might be a little loopy at the end if an Uber is cool less than an hour after fairly complicated surgery.
I had known my husband about two weeks, when I asked him to come over to hang out the night before a colonoscopy in college. I made him taste the prep, turn up the TV while I took bathroom breaks, and just see what he was getting himself into being with a girl with chronic health issues. He made it fun and brought me a smorgasbord of food the next day when I was sobered up and allowed to eat again. Normalize talking about poop and taking care of your health!
Thank you so much for writing about this. I just had my first one in January, at age 39, and felt like a bit of an alien.
I do want to share with all of you what happened to me during my first prep, as my initial appointment was in December. I followed the instructions to a T, drank litres and litres of water, broth, Ginger Ale, etc, along with the prep (pico salax in my case).
I woke up extra early the next morning to finish my prep and proceed to faint in my kitchen, twice. My husband heard me the second time, and as he was trying to help me up -- I was begging for the bathroom -- I fainted again. I made it to the ER instead of my appointment where the team quickly determined I was dehydrated and slightly concussed.
My second prep was a 'gentler' one (bi-peglyte), better suited for my size. I was still nervous about it but my husband kept a close eye on me and I added Pedialyte to my liquids.
The scope itself was a breeze compared to the rest of it, and I was half-awake for it. I don't write this post to discourage you from getting a colonoscopy, but for you to be aware that different preps exist and that the first one prescribed to you might not be the one that suits your body the best.
In the end, I'm lucky that nothing major was found. I've simply added Bio-K to my diet and will go in for another scope in ten years.
Welcome to Colonoscopy Land
I had a just-in-time colonoscopy but it took six months between knowing something was wrong, convincing the GP that something was wrong and it wasn’t just me being fat, getting the appointment with the Gastro, and finding out hey so glad you called we just pulled out some cancer.
My mother, a colon cancer survivor, always said that if everyone who participated in a “cancer walk” would commit instead to drive a person to and from their procedure, more people would be saved, since that can be a huge barrier and very awkward ask.
About two and a half years ago my partner started experiencing some blood in his stool. Doctor told him it was likely hemorrhoids, not to worry. There was no follow up. The bleeding came and went and my partner has a history of getting hemorrhoids, so we accepted that. But then it kept happening. So finally in early 2020 we were able to convince his primary care doc to refer him for a colonoscopy. Insurance wouldn’t cover it solely because of his age (it was about $1200 out of pocket), nevermind the fact that his mother had been diagnosed with colorectal cancer about six months earlier.
Then the pandemic hit, and his colonoscopy was rescheduled. I finally forced the issue to get it back on the books. Sure enough, they found cancer, and after some scans they found it had moved to the liver as well. Stage 4.
In the past two years he has been through pelvic radiation, chemo, liver resection, more chemo, low anterior resection and ostomy, and ostomy reversal. His last scan, in December, was clean.
Don’t ever let anyone, whether they have a degree or not, downplay something in your body that you know isn’t right. And honestly, it’s ok to be a pain in the ass (ha!) to get the medical care you need. In hindsight, I wish I had worried less about being nice and trusting and had forced the issue from the beginning. Our healthcare system tends to be adversarial, putting up multiple roadblocks to care. You really have to get comfortable asserting yourself, because no one knows what’s going on in your body better than you do.
Oh! The best tip I got: If you have access to any Vietnamese restaurants in your area (or are willing to make it yourself), buy some pho, strain it, and feast on the broth during the "clear liquids only" portion of the prep. WAY better than plain old broth!
My mother died at 59 (the age I’ll be in a month and a half) of colon cancer, so I’ve been getting them for years. One year, there was a narrowing of my colon and they couldn’t see the upper part, so I had to have a barium enema. While I was awake, a thick liquid was pumped into my colon as I laid on an X-ray table. I then had to turn this way and that so they could get good pictures. You don’t know uncomfortable until you have to keep a tube in your, you know, while your colon is stuffed full, and the doctor is saying “twist a little more to the left.”
But wait! There’s more! They still couldn’t get the picture they wanted, so they asked me to get up from the table and walk across the room, tube and all, in order to get the picture with me standing up. At that point all I could do was laugh. It was ridiculous. After it was over I loudly eliminated as much of the barium as I could, but I knew it wasn’t all.
Midway through the long drive home - there was no anesthesia so I hadn’t needed a driver - I knew I wasn’t going to make it. I had to stop at a grocery store and use the bathroom there. Judging from the sounds of the first trip to the bathroom I knew there would be no courtesy flush that could mask the gaseous explosions that were to come, so I just made up my mind not to care. I was in another part of town, and I would never see these people again.
I became a woman that day. First, by laughing instead of being mortified by walking bare assed across a room with a tube sticking out of my butt. Second, by not caring that I had massive farts in a public bathroom. In summation, getting a colonoscopy can be good for you in more ways than one. The end.
The worst part for me was when I remembered that, upon emerging from the sedation, I was *desperate* to communicate to the staff that I knew they had been role-playing "Sex and the City" during the procedure, and that I was on board because I happened to be rewatching it.
They were doing no such thing, of course. OR WERE THEY??? I will never know.
More important: Thank you for this. I am that 45-year-old friend who is telling all of her 45-year-old friends to just do this already and that it's genuinely not all that bad, just mildly unpleasant but also kind of interesting.
This is the reminder I needed to get that damn appointment scheduled. My husband has gotten two due to family history. He’s hangry before and loopy afterward where he eats and then passes out on the couch for a few hours.
Since I used to have gross stomach issues, “poopy death” killed me! 😂😂😂For anyone living that life, get a bidet if you can - even a squeeze bottle will help. That burst of water stops the burn so much.
Thank you so much for this, as a person with Crohn’s I consider myself a colonoscopy pro and my experiences have been pretty much the same as yours. I’m extraordinarily privileged to have great health care that makes frequent low cost colonoscopies possible.
One thing I’ve realized recently is that because we don’t as a society talk about poop, knowing what occult blood in your stool looks like is not something the majority of people would be aware of. So let’s take this conversation up another notch!
Fresh blood is obvious, alarming and yes sometimes just hemorrhoids or fissures but also sometimes a signifier that something way more serious like a GI disease or cancer is going on. Occult blood is not as obvious. Your stool turns a darker than normal color because the place that is bleeding is further up than your rectum and by the time it evacuates it’s changed color from fresh to dried. So if you have noticed your poop is consistently darker and it does not correlate to a diet change (like iron supplements or iron rich food intake) that is also something to bring up with your doctor.
Here’s hoping the next ten years of medical advancement make colonoscopies even easier!
Thank you for this awesome, detailed recounting of your experience! It's really helpful as I get ready for my first colonoscopy. And now I'd like to offer a PSA to all: NEVER, EVER opt for the cologuard home test instead of having a full-on colonoscopy. Because my cologuard result was positive, my upcoming followup colonoscopy is coded as being diagnostic, so instead of a $60 copay, it'll cost $3,060. And cologuard has a lot of false positives, apparently. What a freaking racket.
This is so great. Can someone do this for a mammogram? I have one next month and I’ve rescheduled twice because I’m terrified. I saw a tweet that said the two most painful experience a woman has had that were described as “uncomfortable” were getting her IUD and a mammogram, and as someone who has a high pain tolerance and sobbed throughout my IUD process, I’m terrified to get a mammogram.
A note about insurance and costs!
Colonoscopies that are truly preventative screening - something you are doing on a recommended schedule when nothing is wrong, and the test confirms that nothing is wrong - should be treated as preventative and have ZERO COST (an ACA rule). If there is a polyp that is biopsied and it turns out to be benign, it should still be treated as preventative and no cost.
If a colonoscopy is diagnostic (eg: being done to diagnose something that's wrong), there will be a cost... typical copay, deductible, coinsurance.
If you are getting preventative screening services and end up getting a big bill, reach out to the billing department. It's likely because they used the wrong codes, and is something they need to correct.
I became a paid subscriber just to join this conversation! (Also, because these essays are great.) I have been getting colonoscopies for 20 years, because my brother got colon cancer at a crazy young age. He has been absolutely fine ever since, but every three years, it’s time for the prep. The actual procedure is much, much easier than it once was. I stay awake (I ask for “twilight” anesthesia) and watch and chat with the staff. It’s absolutely fascinating. As for the prep, I start fasting and clear liquids 48 hours before. That makes a huge difference in bathroom trips. Jello, ice pops, apple juice, clear broth - the pho idea is great - and ginger ale work best for me. Definitely chill the prep. You can apportion it in one of those exercise bottles with ounces marked on it so you aren’t daunted by how much there is to drink. Clear your calendar, start the prep at noon, and if you have early fasted, you should be clean by evening. My doctor told me the medical team complimented me in their writeup for my clean insides, so my system seems to work. Also, don’t overdo eating right after. Your system is churned up, and I found food shoots right through me. Crank it up gradually. And don’t drink alcohol unless you want to get drunk fast.
So many thought on this post. was diagnosed with Crohn's disease at 34, and over the last 25 years have had at least 15 colonoscopies (lost count!). I continually refine my prep (I now do a whole container of Miralax + a few Dulcolax pills, plus pretty much go liquid diet two days in advance, but this is with my doctor's agreement). I'm lucky to have access to great healthcare (Boston, yo) and although it's an annoying part of having my condition, I'm grateful for that.
Bottom line: Listen to Anne. Get the test. A couple of days of (slightly embarrassing) discomfort is way better than a late diagnosis of a potentially fatal cancer.
The tip I have is that you might get really cold after drinking so much of the prep if you refrigerate it. I needed more blankets to sleep the night before the procedure.
Thank you for normalizing this. I also really wish the medical community would really think about their escort rules. Because for instance does the person really need to stay onsite all day? Can someone just pick you up? Should you just not drive meaning a bus or subway or Uber is ok? Are you ok on the bus/subway/ Uber with an escort? If you don’t have an obvious person who drives this a much bigger barrier than I think most doctors realize. And I think most doctors don’t even really know there own facility rules. Or that anyone has really thought about why the rules are the rules.
Parents if you have a single friend who is an auntie or uncle to your kids, helps drive them places and you wonder what you can do in return consider saying “if you ever have a minor procedure that requires some sedation and an adult to take you home, please ask, we’ll do our best.” Only if you actually mean it and your work would let you.
Since COVID had me essentially dropped off outside the hospital in a wheelchair with a very badly sprained ankle and a newly reconstructed elbow for my partner to load into an Uber. I’m highly skeptical that he needs to be onsite for an entire colonoscopy where I might be a little loopy at the end if an Uber is cool less than an hour after fairly complicated surgery.
I had known my husband about two weeks, when I asked him to come over to hang out the night before a colonoscopy in college. I made him taste the prep, turn up the TV while I took bathroom breaks, and just see what he was getting himself into being with a girl with chronic health issues. He made it fun and brought me a smorgasbord of food the next day when I was sobered up and allowed to eat again. Normalize talking about poop and taking care of your health!
Thank you so much for writing about this. I just had my first one in January, at age 39, and felt like a bit of an alien.
I do want to share with all of you what happened to me during my first prep, as my initial appointment was in December. I followed the instructions to a T, drank litres and litres of water, broth, Ginger Ale, etc, along with the prep (pico salax in my case).
I woke up extra early the next morning to finish my prep and proceed to faint in my kitchen, twice. My husband heard me the second time, and as he was trying to help me up -- I was begging for the bathroom -- I fainted again. I made it to the ER instead of my appointment where the team quickly determined I was dehydrated and slightly concussed.
My second prep was a 'gentler' one (bi-peglyte), better suited for my size. I was still nervous about it but my husband kept a close eye on me and I added Pedialyte to my liquids.
The scope itself was a breeze compared to the rest of it, and I was half-awake for it. I don't write this post to discourage you from getting a colonoscopy, but for you to be aware that different preps exist and that the first one prescribed to you might not be the one that suits your body the best.
In the end, I'm lucky that nothing major was found. I've simply added Bio-K to my diet and will go in for another scope in ten years.