I’ve had numerous colonoscopies because I was diagnosed with ulcerative colitis some years ago. I know the routine (my next event is next week), and it’s not pleasant. But it’s not painful either.
One piece of advice. The doctors sometimes debrief you just after the procedure on what they may or may not have found out. Sometimes they don’t realize that although you may look like you’re awake you actually aren’t fully conscious. So one strong recommendation: if another family member is with you make sure they hear the debriefing and even take notes.
There will, of course, usually be a followup appointment with your doctor (who may not be the one who conducted the colonoscopy), including, if needed, a prescription (Rx), recommendations about diet, and perhaps other things. So far for me, about 20 years after my first diagnosis with UC (and a colonoscopy every 2-3 years), I’m still whole and healthy except for that!
I think you know very well that NO ONE said or insinuated that a colonoscopy is “risk free.” I certainly didn’t anyway.
A colonoscopy is recommended every ten years for people who had NO POLYPS in their first colonoscopy not solely because of the risks of the procedure, but also because colon cancers are very slow growing. Someone who made it to 50 years old with no polyps is highly unlikely to grow an adenoma that progresses to cancer in that time. Even if the procedure was practically risk free, it would be idiocy to screen for cancer every year in a normal risk individual. It takes many years for a normal risk person to grow a polyp and for that polyp to develop into cancer.
Personally, if I was given a 10 year ticket, I’d probably pay out of pocket for a stool test at 5 years, but that’s probably an abundance of caution due to the fact that I have up close and personal exposure to colon cancer (found in my husband at age 47).
I wouldn’t say that “of course” there would be a follow up appointment. I have never had a follow up appointment, and I had a large polyp removed during my first colonoscopy. I did get a thorough pathology report, and I imagine my doc would have been happy to meet with me if I’d asked. But I don’t think follow ups are necessarily routine unless a significant issue was discovered.
@nrdsb4: Doctors may differ in how they do followups. I’ve had 3 different gastroenterologists (doctors retire or relocate, and so have I), and I’ve had quite a few more than 3 colonoscopies. The initial scoping was a result of my having bleeding. My personal physician, who was a GP, was convinced that this was caused by giardia, based on the location of my recent travels to the Baltic region. But the meds (e.g., flagyl) prescribed did not stop the bleeding. So I then was referred to a GI specialist, and then I had a complete digestive system exam, with Xrays, etc., with a focus on upper and lower parts of the gastrointestinal tract. This included a colonoscopy.
The person who conducts the procedure at the hospital or clinic is not always your own doctor. And if the exam included taking of biopsies, your physician can only talk to you about the findings after the biopsied cells are analyzed.
THAT is why you may not get an immediate – or conclusive – result on the day of your colonoscopy: biopsies, different medical personnel, etc. And if you have a specialist already, say a gastroenterologist, even if that person herself conducted the colonoscopy she cannot give you a definitive follow-up until any necessary tests (and post-operative analyses of biopsied tissue) have been performed.
@mackinaw agreed in your particular situation that follow up appointments would certainly be called for, but for the typical patient, many physicians will simply call to discuss results or just send the pathology report to the patient. At least in my experience with about 14 physicians, there would not be a follow up appointment if results were non cancerous, or if there was really no treatment prescribed for any particular condition. Even in the case of precancerous polyps that are successfully removed, an appointment to follow up would not be necessary as long as a thorough report is sent to the patient. Most of the docs I worked with would call a patient to discuss the pathology of a precancerous lesion, but would not call if a polyp was shown to be benign.
In most cases, there would be no reason for a patient to have the expense or time commitment of a follow up appointment except in certain instances.
Just my experience in one particular location.
The important thing is that whether or not a patient sees the physician later, they understand completely the pathology report and its implications, and that they have a good understanding of when their next procedure should take place.
@Knowsstuff - Thank you for sharing your experience with Lynch. I’m sorry your family members have had to suffer due to the selfishness of relatives who kept secret the details of their medical conditions. My husband’s family avoids sharing medical news as well.
@SnLMom. When testing positive Ambry (blood lab) has a letter that goes to the Doctors office to give you patients. It is actually written to be dispensed to family members to educate them.
This is so everyone can do a family tree to complete it also. Knowledge is power.
@ucbalumnus nothing is “risk free.” Colonoscopy is not recommended yearly for everyone because 1) cost 2) it isn’t necessary for low-risk people and 3) compliance would be pretty poor. You’ve seen on this thread that people are reluctant to do it even as infrequently as every 10 years.
The point that @ucbalumnus is making is simply that statistically, an inexpensive and noninvasive annual FIT stool test is pretty much as effective at cancer screening as the colonoscopy. So it isn’t a choice between colonoscopy vs. no screening at all — for people who are at low or average risk for colorectal cancer, the home testing kit is an appropriate form of screening. Colonoscopy is very slightly more effective at detecting cancer and has the added benefit of potentially preventing cancer by removal of pre-cancerous polyps; but when the risk & cost factors are weighed in, many people would find annual FIT testing to be the better choice for them.
And as far a population-wide risk, when accounting for screening compliance levels, the FIT test is superior – for example, in one randomized trial, when doctors recommended colonoscopy to patients, 38% followed through; but when they recommended a FIT or FOBT test, then 67% of the patients completed the test. (From https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3360917/ )
So not superior because its a better test, but superior because among patients who are told only about the colonoscopy option, 62% end up opting for no screening at all. Many more people actually get the screening if they are given the stool-test option.
Now, the problem is in the math – 67% of the 38% of colonoscopy patients in the trial came up clean (no polyps of any kind) and probably were done with screening for 10 years. We don’t know from the randomized trial how many of the FIT/FOBT users actually followed through with repeat annual testing. It’s quite possible that when measured over time, the compliance rate declined.
But on an individual level – I think the takeaway message as that there is a choice, and choosing the home-testing kit is a valid and legit choice for many to make. It’s not like we FIT-testers are neglecting our health – we’ve just opted for a more convenient, less-invasive means of screening. I honestly think that the convenience factors play a bigger part in the choice for many than concern about risk factors – there is no prep, no appointments to make, no time missed from work, no need to arrange transportation.
@calmom, but I don’t think a lot of people ARE using the FIT-test. They’re just not doing anything. And I guess I don’t understand - I think a BIG advantage to colonoscopies is that they can remove pre-cancerous polyps. That’s what they did in my case, a person who had no family history or risk factors. What would have happened if I’d just used FIT tests? That’s an honest question.
The most likely thing is that you would have had a FIT test come back positive and a recommendation for a followup colonoscopy. There’s a chance that a FIT test would have missed a pre-cancerous polyp in year #1, but the chances of it missing it two years in a row are much smaller, and a false negative gets less likely each time the test is repeated. Because polyps are slow growing – there are very few situations where the delay of a year or 2 in finding the polyp would actually be life-threatening or make a difference in treatment.
And keep in mind that a polyp can also be missed during a colonoscopy – so there is also a possibility that some people who get an “all clear” and a 10-year return date on a colonoscopy also have missed, pre-cancerous polyps that will become cancerous in some time frame of less than 10 years. That is, there is probably some very small fraction of individuals who are alerted to a cancer by a FIT test being done well before they are due for a followup screening colonoscopy.
But the point is, the data shows that the “not doing anything” people are twice as likely to get screening if they are given the option of the FIT (or equivalent) test.
And probably some of those not-doing-anything people are simply not aware of the fact that the stool tests are near-equivalents in terms of accuracy at detecting cancer, including pre-cancerous polyps.
Polyps are missed when the doctor is not thorough in their approach. Also blue dye and or white light helps to find the “flat” polyps that can be missed without it. Not sure why not all GI don’t use one of these approaches. It’s usually used when you have a family history or the Doctors expertise.
Probably because physicians generally recommend colonoscopy as the first choice, and may not mention annual FIT as an option (with colonoscopy if FIT returns a positive result).
One person on these forums mentioned being diagnosed with colon cancer 8 years after a clean colonoscopy. Annual FIT, while less sensitive for a single instance, gives much more frequent chances of detection (10 chances over 10 years, versus 1 chance if you do colonoscopy every 10 years). Perhaps that is why other rich countries mostly recommend frequent FIT as the primary screening method; a few that do recommend colonoscopy as the primary screening method also recommend FIT frequently in between colonoscopy intervals.
“I actually gained weight on my prep day, much to my disappointment! All that sodium in the gross drink- I retained fluids despite all the, well, you know… I, too, was miserable on the prep day (I’ve had 2 now) without eating and next time I won’t go to work. I wasn’t prepared with the right liquids and I was not a fun person.”
Wow. I lost 5 pounds and kept off 2 of them after! But agree that the liquid diet day is so much better if you treat it as a sort of sick day. I’ve had 3. When I told a friend about how I did those days (sleeping in, binge watching tv and movies, trashy magazines, bubble bath and naps) she told me it convinced her to stop putting off the procedure! ( I didn’t eat at all though, just had a glass of Gatorade or 2 during the day…found that easier)