162 Comments
Feb 20, 2022Liked by Anne Helen Petersen

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.

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Feb 20, 2022Liked by Anne Helen Petersen

Oh wow—that's a really astute observation re: "cancer walk" vs. driving a person to a screening. Glad your mother made it through!

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Feb 20, 2022·edited Feb 20, 2022

As a cancer and chemo survivor myself (lymphoma), the bitterness can be very real. And PSA your local ACS office can usually hook you up with volunteer or free transportation to and from procedures or chemo infusions.

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Having gone through cancer treatments has completely changed the way I view how society "supports" cancer/people with cancer. Your mother is a sage.

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I’m so relieved for you. Thank God. Many doctors would easily discount rectal bleeding as hemorrhoids in moms — but it’s better to be safe and checked than be sorry later.

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Hi Marguerite, would you be willing to elaborate a little on how you knew something was wrong? For those of us who have no idea and don't want the anxiety-trip that is asking Dr. Google?

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Sure. This was a few years after going through undiagnosed lymphoma during and after my first pregnancy, so I had already learned that I was my only advocate. I had been having bloody diarrhea every day for a week when I first went to the gp who said hm, maybe it will go away, then she ordered some stool tests (had to do the test tube samples) then I said hey listen, I’m (just) over 40, I’m a cancer survivor, my mother is a colon cancer survivor, something is up. She gave me the business card for the gastro (in the large urban hospital network) who had a 3 month wait for appointments, so I waited. Then he said well I guess, just to be on the safe side, ok - and the colonoscopy was another 2-3 month wait. Then he pulled out a large mass in addition to the polyps, that was cancerous.

Don’t do Dr. Google, but do listen to your body. If you’re in a med group, ask to see another doc in the group. That is how my lymphoma was finally diagnosed, I had a sub doctor who felt the lump on my collarbone and took me seriously instead of just complimenting me on my amazing weight loss.

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Feb 20, 2022Liked by Anne Helen Petersen

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.

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Feb 20, 2022Liked by Anne Helen Petersen

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!

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Better than bouillon saved me once I realized I could have more than just Gatorade.

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Oooh thanks for the tip!

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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.

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I’m so sorry about your mom. My mom died of stage 4 breast cancer at age 45. Because of her diagnosis, my sister and I take our annual check ups very seriously — it’s bittersweet as I get close to her age though. If only she had known.

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😂😂😂😂 OH MY GOD. I’m dead. But I’m so proud of you and happy you were in the other side of town where no one knows your name lol. Thanks for the laugh

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Oh boy, I have also experienced the barium enema and hope to never again. Truly 1000x worse than a colonoscopy in my book.

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Feb 20, 2022Liked by Anne Helen Petersen

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.

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That is hilarious! :)

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Feb 20, 2022Liked by Anne Helen Petersen

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.

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Bidet plus squatty potty has made this IBSer unable/unwilling to poop anywhere else. It all just seems so rudimentary and unnecessary.

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Best additions to our house, hands down. I miss them when we’re away!

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Feb 20, 2022Liked by Anne Helen Petersen

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!

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Feb 20, 2022Liked by Anne Helen Petersen

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.

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Thanks for sharing this (and also holy hell). I had been toying with the idea of Cologuard. I'll never understand why diagnostic costs so much more than screening. I realize it offers an incentive to do screenings, but also our healthcare system is just so screwed up.

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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.

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After my first mammo, I was told

I had dense breast tissue too. I asked my doctor about it and he said of course I did because I was 40! Younger breasts tend to be dense and then apparently become less dense. He said he’d be worried if he had a patient with dense breasts at 70 or 75 but certainly not at 40. I’m 47 and so just had mammo #7. I think they are one of the easiest things I do for my health all year. There is some squishing and it can be uncomfortable but I wouldn’t say painful…but it’s over in 10 min max. And for whatever reason (and my mom and I discuss this too because we go to different places for mammos so it’s not just my experience), mammogram clinics ALWAYS run on time. It’s never taken either of us longer than 30 min from getting out of our car to getting back in. It’s the only appointment all year where I can say that!!! Anyway, good luck and good for not delaying it just because you’re nervous or anxious 😊

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The advice and experience in here is amazing! I’m young to get a mammogram with no family history (37), but two of my closest friends around my age with no family history have been diagnosed and have gone through the most hellacious chemo in the past 2 years, so I figured I might as well get a baseline earlier.

Thank you for sharing your experience.

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It's NOTHING like the IUD insertion I had (which I found like being in labour, but my doc said this is completely variable and depends on what they need to use during the process). It's not your most fun day out - but what they do is lay your breast on a plate, then bring another plate down to squish it. As they squish you start to think 'hang on, is this going to stop?' but it does stop and it's like having a lot of pressure both sides of your breast for about 30 secs. They do have to manoeuvre you round a bit, and I think they do two images on each side.

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One more mammogram thing I haven’t seen anyone else mention. I went for the first time last year and was told before I left that it’s pretty common to have to come back for a followup… and that I shouldn’t get worried / assume I have cancer if that happened. Sure enough, I got a call to come back in for some further imaging and it ended up being fine. I was glad I was told that I may get the followup call bc I would have worried a lot more if I didn’t know.

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It's different for everyone. I was afraid that a mammogram would hurt terribly; my mother said it was painful, and I have dense breast tissue. But it was fine! Not pleasant, just uncomfortable.

For that matter, IUDs are different for everyone and different each time. I'm on IUD #3 and the pain range has been pretty broad. That said: Ask for a cervical block! I don't know if this is standard or not but a friend suggested I ask for one before a problematic removal (they had to navigate around fibroids). I was convinced that they wouldn't have it available or wouldn't give it to me for some reason, because if it was available why wouldn't they offer it every time? But sure enough, all I had to do was ask, and then it was...well, still not pleasant, but better than without it.

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I also have very dense breast tissue. My sister sometimes has to go back a second time so they can do it again because they didn’t get a good view.

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same for me! I've had to have second-takes several times over the years. These days my insurance now pays for the 3D mammogram, which in my admittedly limited experience has not required any retakes for my homogeneously dense tissue.

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This is good to know. My sister also mentioned this. I’ll have to check with the imaging center to see if they have this (I live in Montana, she lives in NY).

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I’ve had IUD insertion, removal, an Essure, and a full ablation. And two c-sections. Would trade a mammogram experience for any of them!

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I also got Essure about 12 years ago -- I have never met anyone else who's even heard of it! So, for me, I found getting it to be mildly uncomfortable, but not really much more than a regular (but a lot longer) pelvic exam. But the follow-up special x-ray with the dye a month after, to check if it worked? I thought I was going to puke all over the x-ray table. Was this because it was actually that uncomfortable, was it because getting it was done in a cozy doctor's office with a nice older lady doctor, and the x-ray was in a sterile lab with a middle-aged white dude technician? Some combination of the two?

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Oh honey! It is definitely not super painful. It used to be much more uncomfortable but I think they have improved the equipment. I had one 6 weeks ago and it was quite chill. It was my 2nd or third? Can't remember, I don't do them annually but more like every 5 years, drives my dr crazy.

At our hospital they have a women's imaging waiting room, so that's where you change (clothes (shirt/bra) in a brown paper bag) - just wearing the gown but your bottom half stays clothed. They call you and bring you in - with the frequent checking that you are who you say you are via DOB - and then I stood in front of a machine and opened my gown. The nurse adjusted a metal shelf so my boob could fit on it. First one side - snaps pictures - then the other.

It's squishing/smooshing your boob and they might tell you to lean into it more or turn a little so they have the view they want for the scan - so that can be a little uncomfortable. My muscles under my reast felt a little strained (very little) afterwards.

It is over in 10 minutes, if that. Not even enough time to talk about the weather (the topic everyone in Vermont talks about 24x7). Results were available online within a couple days.

I have big dense breasts so my experience is all about them positioning the shelf to get as much breast as possible on there. Hopefully someone else with smaller breasts will share their experience here.

Every time I have a diagnostic test I plan my funeral in my head, which is completely ridiculous but must be part of my coping mechanism. I find that it helps distract me from worrying about pain or discomfort.

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Small-breasted lady here! (B cup—experience might be different for people A-cup and smaller.) Everything you are saying is pretty much my experience too. Lots of adjusting ("lean in, put your hand here—no, here—OK, try here") and positioning even with less breast tissue. Probably 5 minutes in all, reflective of less breast, ha!

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The post I was looking for! Thank you. I have always been fairly comfortable with medical things, but after I got my IUD in (which was a pretty horrific job by the doctor, TBH), I’m now a little more wary of procedures that are billed as “uncomfortable” with no qualifying detail. Thank you for this!

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I will agree with those who say that a mammogram and IUD insertion are not even in the same universe! Mammograms (which I've had many of) involve some discomfort, but it's not that bad - mostly I always concentrate so much on not breathing while they're taking the image (so that it will be in focus and I won't have to redo it) that the discomfort is over before I have time to think too much about it. IUD insertion (Mirena) however, was VERY different! It definitely hurt and I winced so much that my gyno was like, come back here! (I imagine she was speaking to my nether regions, LOL)

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Oh, a mammogram is NOTHING like my IUD insertions were. I’d get a mammogram every day rather than ever get another IUD. The mammogram is goofy, awkward, and a little uncomfortable (a stranger is going to cheerfully manipulate your breast into proper squeezing position), but it’s not a big deal at all. I get them yearly as well as preventative MRIs due to family history. The MRI sucks ass, but the mammogram is a minor hassle.

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I found a mammogram much less uncomfortable than I had been expecting based on the way people talk about it. It really does not stand out in my memory as an uncomfortable, let alone painful, experience.

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I found the mammogram experience so weird because it was the first health care experience I've had (I'm mid-40s and fat with chronic stuff) where there was visible effort to make it less scary. I am not body shy, and went into it with "Do what you need to do to get it done quickly" and let her move my breasts around as needed.

I found the actual process moderately uncomfortable but not painful - the hardest part for me was the stretching feeling on the sides and not being sure about breathing. (They don't want breathing to move your body, since that affects the image, but some friends have had "breathe straight through, just not deeply", and some - me - have had "hold your breath for this stretch" and sorting that out before we were in the middle of it would have helped. Next time, I'll ask when we're setting up how they want to do it.)

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I just had my first in October (40 at the time). The mammogram was much less painful than I’d been lead to believe (squeezing and compression, but not bad—mammogram machines are better than they used to be). I’ve paid for considerably more painful massages, and gone away a happy customer.

The mammogram saved my life. I sincerely hope that you have a slightly inconvenient and truly minimally uncomfortable experience, and that the results are entirely boring. But if they aren’t, you need to know.

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I'm terrified of this, too! I barely even have boobs (seriously, AA is generous), so I can't picture how they're going to lay my boob on a plate and squish it because like...there really isn't much to lay and ribcages aren't squishable?

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I have small-to-medium breasts and they are wide-rooted (east west boobs as I have called them) and I will say that it is kind of amazing how much the technicians are able to wrangle them into the squishing area. There is some contact between the technician's hands and one's breasts during this process, but the techs where I go always wear rubber gloves and are very professional, so I've never felt uncomfortable with it (it does not feel like groping).

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It’s not fun but every one I’ve had has been done as quickly as possible by women who totally get it and who have been some of the most wonderful medical staff I’ve ever dealt with. They gave me a rose after my first mammogram, along with the very practical advice to get a copy of my mammograms if I was going to move to another state.

The best mammogram experience I’ve had so far was at a women’s clinic where they made every step as comfortable as possible - a private changing room and locker, a soft, warmed bathrobe, “spa” lighting and ambience. A friend told me about it and I’ve recommended it to others. Pre-pandemic you could also book a massage afterwards! It’s worth asking around to find out where people have had mammograms and if they would recommend that location. Even the most bare-bones location I went to - a satellite clinic in a shopping mall - had wonderful staff who did what they could to help me feel as comfortable as possible.

I have very dense tissue and a tendency to get benign cysts that hurt when pressed, so while I do find the process painful, each squish is a matter of seconds and I don’t have lasting pain afterwards. Tell your tech if you are feeling apprehensive! They are professionals who have done this many times and can help!

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I’ve had so many mammograms. They are low key annoying painful. If you get sore breasts with your period don’t schedule it then. IUD insertion was WAY more painful.

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Feb 24, 2022·edited Feb 24, 2022

I'm 39 with dense breast tissues and have had many mammograms thanks to breast cancer and have had an IUD inserted, and the IUD was waaaaaaaay worse. The mammogram only hurt on the breast that had a tumor in it. The other one was nothing. It's primarily mentally uncomfortable in the way a pap smear can be mentally comfortable with some mild pressure when the plates squish your boobs, but I assure you, the mammograms are not a big deal. I hate how people make it sound like they are.

Trust me, you want the mammogram. You don't want to run the risk of breast cancer to go undiagnosed.

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I had a diagnostic 3-D mammogram at age 33 due to suspected breast cancer (which it was). To be honest, mine was painful—deeply uncomfortable for the several minutes it took to do the imaging. If it makes a difference, it wasn’t a sharp pain, it went away after the procedure stopped, and I didn’t need to cry (which has happened during more painful procedures). Basically, it was more painful than I expected but was still tolerable.

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My own experience with breast cancer and all of the mammograms that came with it was that it only hurt when it was smashing my tumor. My cancer-free side wasn't bad. Was that your experience or was it routinely bad?

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Feb 21, 2022Liked by Anne Helen Petersen

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.

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I have questions about this!!

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This doesn't come from personal experience with colonoscopies in general, but I manage health benefits for employers and this is my general understanding of how health screening and preventative care should be billed. You can reach out to your insurance company for more info by calling their 1-800 customer service lines. https://www.cancer.org/cancer/colon-rectal-cancer/detection-diagnosis-staging/screening-coverage-laws.html

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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.

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founding

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.

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Feb 20, 2022Liked by Anne Helen Petersen

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.

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author

I did too, I never thought about the fact that this part of why — also because I was very hungry and calorie deficient

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Feb 20, 2022Liked by Anne Helen Petersen

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.

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Even though I lived about a half mile from the facility, they would not let me leave alone. I'm sure I would have been fine calling an Uber, even walking. It was an obstacle since my partner does not drive. If COVID ever resolves, I would volunteer to drive people as a way of paying it forward now that I'm retired.

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I had an upper endoscopy in grad school and the friend who brought me home and babysat me was totally amused by how loopy I was. Maybe that can be an incentive to help for some of these procedures :)

I have had to ask other friends for rides to all manner of cancer-related appointments that haven't been as fun. (An infant even came once with a friend who was on maternity leave for something once in the Before Times.) I hated asking friends before my partner came along, but then if I thought about how often something happened to a friend and I would tell them, "Let me know how to help!", this... is it. People often WANT to help if you are sick/getting tested/scared; this is an opportunity for them to actually help! Win-win, right?

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Feb 21, 2022Liked by Anne Helen Petersen

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!

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Feb 20, 2022Liked by Anne Helen Petersen

My father was diagnosed with colorectal cancer at 53, so I got my first scope at 37 and another just in January at 42. I hate it so so so so much. My wife took my son to her parents for a trip so I had the house to myself during THE POOPENING.

My best advice is to not watch/engage in any things you really love while you do the prep. I had to stop watching the Wire for about 3 months before going back because it was what I watched during the prep for my first scope. Don't use a favorite cup for the drink; you won't want to look at it for A WHILE.

Both times I've done this I've had different preps, and both times I have ended up barfing, which is TERRIBLE. Then I call the on-call doc and they usually say I can stop drinking the prep. This part is GREAT.

I usually have my dad be my "responsible adult," because: his fault.

On a more serious note, my doctor said they've seen a real uptick in scope appointments since Chadwick Boseman died.

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