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Is a yearly colonoscopy REALLY the best idea?

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Posted 12/19/2015 2:03 PM (GMT 0)
I haven't posted here for awhile, but I come back here and read periodically because I know what a great source of information this site is.

I had a colonoscopy yesterday, my third or fourth yearly since I became 10+ years post diagnosis and my GI started insisting on it. It was an awful day, with a three plus hour wait for my procedure to start, which was already late in the day (1:45 p.m.) because I had to reschedule my initial appointment because of a funeral and wanted to get it in before the end of the year because I had met my deductible for the year. I showed up about 1:15 and left about 6:15.

Today, I feel light headed and a little bit dizzy, which is an unusual thing for me post colonoscopy. I have a slight headache. I also had a bowel movement this morning that looked like I was flaring, with mostly dark stool/blood mixture at the bottom of the bowl and some floating mucus.

I have in the past had polyps, including three or four years ago, one large polyp near the cecum. I seem to remember that polyps have been found on all my scopes except for one previous one and yesterday -- although yesterday, he found some erythematous mucousa in the descending and rectosygmoid colon (a new finding, I believe).

So, my question today is how do you all weigh the risks of colon cancer versus colonoscopy. Am I being scoped too often? What is the price to pay to my health by the prep, the foreign body introduced into my entire colon (colonoscope), the biopsies, not to mention the incredible cost in time and dollars? The potential for a perforated colon, introduction of bacteria, the potential for infection at the IV site.

For sure, since my insurance just went up, along with my deductible, I am pushing these out to every 18 months instead of yearly, but is that even too often? I am one of the luckiest UC patients I know. I haven't had a flare for many years (five? six?) and my UC is controlled very well with Asacol (three 800 mg. tablets daily) and Imuran (two 50 mg. tablets daily). Anyone want to discuss the pros and cons to yearly colonoscopy and what your personal decision as been regarding the benefit versus the risk?

I'm sure my signature info is old, so please ignore.

Thanks for any thoughts any of you want to share.

Mitz
60 year old female
UC diagnosed in 2000 or so
Clinical depression for too long to even contemplate
hyperlipidemia
Posted 12/19/2015 2:07 PM (GMT 0)
This doesn't appear when I refresh. Wondering if it actually has posted.
Posted 12/19/2015 2:29 PM (GMT 0)
Well Mitz, you've posted something - Just don't know if it's exactly what you intended smilewinkgrin
Posted 12/19/2015 2:34 PM (GMT 0)
Having a scope is a pain in the ass - So for me, I do it as little as possible. And for me, I figure something else will likely kill me before the big c, so I'm not too concerned.

But please don't listen to me. Do what's right for you. There are risks lurking around every dark corner. The one's that we are concerned about usually are the ones that never happen !
Posted 12/19/2015 3:07 PM (GMT 0)
Thanks, UShipped. Yeah, there's risks around every corner. That's kind of the point I want to discuss.

For example, if 3% of people who get a colonoscopy experience problems as a result, and if .3 percent suffer potentially life-ending complications as a result of the colonoscopy, and if there's a 3% chance of getting colon cancer for someone with my medical/UC history, and a .3% chance of getting colon cancer that could end my life, is it a tradeoff that is fair to use to conclude that the added cost (and my deductible is going up to over $5K next year) and the unpleasantness and the lost productivity is worth it or not. I don't know. Just want some thoughts about it.

Nice to meet cha, BTW. Love your clever name. My GI always has poop jokes. He's a real cutup!
Posted 12/19/2015 4:15 PM (GMT 0)
The yearly schedule is a population recommendation. This means that based on the best data, there will be more benefit in the population than risk.

However there is room to look at each case. Just like other public health recommended best practices, they can be improved by bringing your personal medical history (and family history) into the picture.

But this should be done in an objective process, and not with emotion. Also you are using population percentages of risk against individual perception of unpleasantness. This is not a mathematical legit thing - just weight that you don't like it, and it costs $XX in your case, and it offsets some risk that may be +/- 3% based on your history. In your case with polyps found so often, it may be wise. Polyps are often on the road to cancer. Not always, but often enough.

Post Edited (DBwithUC) : 12/19/2015 10:37:28 AM (GMT-7)

Posted 12/19/2015 4:25 PM (GMT 0)
I have pushed back against my GI's when they wanted first yearly and then every other year c-scopes. I know my body and cost/benefit it was not worth the agony. Cost was partly money and partly the physical cost to my colon of going through the prep and then recovery taking several days. And I'm retired so would have been even greater cost if still working.

Here's what I think the GI's are doing, and money is only part of it IMO:

-they cannot rely on symptoms we report to gauge whether meds are helping inflammation. They only believe what they see and what biopsies show. This is not wrong because some people have low symptoms but still have inflammation that needs to be treated. Untreated inflammation leads to polyps which can lead to colon cancer.

-GI's adhere to current medical guidelines telling how often UC'ers should be scoped. There is a wide leeway on frequency guidelines however and some GI's want to do more frequent c-scopes than others. Younger GI's have med school loans to pay off and if a yearly scope is with medical guidelines they do it.

MY current GI has read the reports I have read which say that yearly scopes do not result in more cancer detection. So he has pulled back on pushing me for a c-scope and it's been 4 years. However I am in remission so there's that fact to add.

I have never had a GI "fire" me for not getting a c-scope or even frown at me or lecture me. They make a note in my file that they rec'd it and I turned it down, their liability is then covered. If I flared up I would still not have a scope done until I'd tried everything possible to get it controlled and even then what would a scope show? Inflammation? Duh.

Your body, your decision.

edit to add: your polyps do change the scenario quite a bit. Again your decision with your own facts in hand.

Post Edited (imagardener2) : 12/19/2015 9:28:03 AM (GMT-7)

Posted 12/19/2015 4:34 PM (GMT 0)
I've known people who have died from colon cancer and it's one of the ugliest deaths I've ever seen (right behind stomach cancer).
I haven't had polyps, except the kind that indicate healing of old inflammation, but I have had inflammation spread from left-sided to pan colitis. For me, it's a matter of being proactive about my health and doing everything I can to limit the risk of cancer. It's a pain (high deductible, the prep, getting to and from when I live alone, the pounding headache I have the next day from the drugs, etc...), but it's not expensive or inconvenient enough for me to not do it.

That being said, this is a totally personal choice. Also, if you're not experiencing inflammation and you're not worried about polyps, what about alternating colonoscopies with a flex sig every 18 months? The prep is easier and a lot of people do a flex sig without anesthesia, which makes it cheaper.
Posted 12/19/2015 5:14 PM (GMT 0)
Do you have a family history of Colon Cancer or any other cancer risks besides UC?
Posted 12/19/2015 5:32 PM (GMT 0)
Thanks, everyone.

I agree that the polyps change the equation a lot. Still....

I'm self-employed as a freelance court reporter, so losing out on a day of deposition work could mean a week's worth of at-home work, and income for a week's worth of work.

More pondering is in order, I guess. Thanks everyone for your input.
Posted 12/19/2015 5:39 PM (GMT 0)
Only colon cancer history is my uncle on my mom's side recently died at age 87 of colon cancer. (I think. he died, just not sure it was from the cancer.) No other cancer in my family that I'm aware of.

I guess the polyps scare me enough that I probably will agree to do the test, but I am going to push it back to every 16 months so I only have to pay that huge out of pocket every other year -- depending on what the biopsies come back showing, if anything, and the doc's explanation about the erythematous mucosa and what that means. Or maybe a polyp-free scope means I can skip the next one.

I guess we all have our crosses, don't we. I certainly would not want to get colon or rectal cancer. ~sigh~
Posted 12/19/2015 5:41 PM (GMT 0)
So you would do it if it was cheaper? That may help frame whether the pondering is about screening or cost.

As costs go up in individual cases, practicalities may dictate less screening. But it does not change the underlying validity of the screening.

I would do a lot of checkups less often if I was trying to pay the rent.
Posted 12/19/2015 5:52 PM (GMT 0)

DBwithUC said...
So you would do it if it was cheaper? That may help frame whether the pondering is about screening or cost.

As costs go up in individual cases, practicalities may dictate less screening. But it does not change the underlying validity of the screening.

I would do a lot of checkups less often if I was trying to pay the rent.

b

---------------------------------------

I don't know. I changed my insurance this year because it got so unaffordable, with me turning 60 and insurance getting more expensive anyway, so jumped my deductible/out of pocket max to $5,250 from $3,000. In the past, I've always met my deductible by colonoscopy time so it wasn't part of the decision-making process. Now I pay a 40% copay, a $1800 deductible, and a out-of-pocket max of $5,250. As much as I don't like it, I *can* afford it because I'm 60 and have lived in the same house for 33 years, so it's paid for and I have no debt.

It would be foolishness for someone in my position to make this decision based only on cost, and I am not doing that. Cost is a factor in most "purchasing" decisions I make, whether that's a car or healthcare. That said, my insurance company gets billed somewhere around $5,000 for my colonoscopy, so it's not exactly chump change. I'm not sure what they actually pay.
Posted 12/20/2015 1:23 AM (GMT 0)
I believe the recommend ation is, Pancolitis usually warrants annual colonoscopy after 8-10 years of uc due to increased colorectal cancer risk.
Everyone else should have every other year colonoscopies, as risk is increased but not quite as much.
Posted 12/20/2015 11:18 PM (GMT 0)
Welcome back, MitzMN! Good to get your update, though sorry you have c-scope dilemma. Probably the polyp development warrants more frequent scoping in your case; so it may be that 18 mo. between scopes is enough of an interval to catch them while still small enough to be removed during the procedure. I can understand your dislike for doing c-scope annually. Are you still getting Demerol/Versed sedation or do they put you out totally? (Where my gastro practices, hosp requires Propofol anesthesia now-- so more staff involved & more expensive.) / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 12/20/2015 11:55 PM (GMT 0)

Old Hat said...
Welcome back, MitzMN! Good to get your update, though sorry you have c-scope dilemma. Probably the polyp development warrants more frequent scoping in your case; so it may be that 18 mo. between scopes is enough of an interval to catch them while still small enough to be removed during the procedure. I can understand your dislike for doing c-scope annually. Are you still getting Demerol/Versed sedation or do they put you out totally? (Where my gastro practices, hosp requires Propofol anesthesia now-- so more staff involved & more expensive.) / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)


Hey, Old Hat! Good to see you still here!

I'll live with the c-scope dealy while getting short-tempered with the procedure on a yearly or every-18-month basis. I just had to complain a bit.

At my endoscopy center, they do fentanyl and versed. Friday, he ordered 8 mgs of versed and 150 of fentanyl. I didn't wake up once during the procedure (which is unusual), and noticed last year it was 125 and 6, so that probably accounts for why I never woke up and why I had a bit of a hangover the next day. He'd had a long day and probably knocked me out on purpose (just kidding -- I think). I really don't think he'd "overdose" me to shut me up.

It's been stressful around here, having turned 60 on the 4th, my Mom falling on the 4th, spending then a few days in the hospital and now looking like she's facing a dementia diagnosis, not knowing what the future holds except that she can't drive and will be depending upon me more in the future. It's what we all go through with our parents who live long lives, so . . .

Good to hear from you! How are you doing?
Posted 12/20/2015 11:59 PM (GMT 0)

iPoop said...
I believe the recommend ation is, Pancolitis usually warrants annual colonoscopy after 8-10 years of uc due to increased colorectal cancer risk.
Everyone else should have every other year colonoscopies, as risk is increased but not quite as much.


I believe you are correct but I also do not have pancolitis, I have left-sided colitis. FWIW, I have oodles of pseudopolpys, too.
Posted 12/21/2015 12:04 AM (GMT 0)
The cancer risk goes way up after you've had the disease for 8-10 years, particularly for older patients. The link between chronic inflammation and cancer is well established.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657965/

I don't like getting scoped every year either. I think I'd like colon cancer a lot less.
Posted 12/21/2015 12:16 AM (GMT 0)

Richard in NY said...
The cancer risk goes way up after you've had the disease for 8-10 years, particularly for older patients. The link between chronic inflammation and cancer is well established.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657965/

I don't like getting scoped every year either. I think I'd like colon cancer a lot less.


What choo talkin' about Willis? And who are you calling "older"????

Yeah, I hear ya, Richard. I'll talk it over with my doc. I'm sure he'll convince me to keep the yearly schedule. I'd like to do some fun stuff with my income, like travel, instead of paying thousands upon thousands of dollars every year for medical. When is it going to stop going up and up and up? <-- rhetorical question, of course, because we all know the answer is "never," and I certainly can thank my lucky stars that I am relatively healthy.
Posted 12/21/2015 12:24 AM (GMT 0)
I'm luck enough to have Blue Cross/Blue Shield under the federal employee program, so my annual scoping is fully covered. One thing I learned when my insurance wasn't that good was that it is much cheaper to have it done at your doctors office than to do it outpatient at a hospital.

The payroll deduction for our insurance is going up in January and it's not cheap now. The other way they get us is that we don't have a copay for medications we get at the local pharmacy, we have coinsurance, so we pay a percentage of the cost, which is often way higher. Mail order is still copay, but the copay is high - $80 for a month's supply of a brand name drug.
Posted 12/21/2015 1:27 AM (GMT 0)
Plagiarizing ima's thread from last year, a colonoscopy every year may not be absolutely necessary unless you have dysplasia. And if you are going to get a scope, it is much safer to not use anesthesia (if you can tolerate it), since propofol can also be risky.

https://www.healingwell.com/community/default.aspx?f=38&m=3116202

“Therefore, at this time, most gastroenterology societies recommend that patients with at least 10 years of pancolonic ulcerative colitis undergo a surveillance colonoscopy every 1-3 years (depending on the society)...”

“Colonoscopy every 1 to 2 years with biopsies for dysplasia...”
Posted 12/21/2015 12:37 PM (GMT 0)

Richard in NY said...
I'm luck enough to have Blue Cross/Blue Shield under the federal employee program, so my annual scoping is fully covered. One thing I learned when my insurance wasn't that good was that it is much cheaper to have it done at your doctors office than to do it outpatient at a hospital.

The payroll deduction for our insurance is going up in January and it's not cheap now. The other way they get us is that we don't have a copay for medications we get at the local pharmacy, we have coinsurance, so we pay a percentage of the cost, which is often way higher. Mail order is still copay, but the copay is high - $80 for a month's supply of a brand name drug.


I don't have a choice where to do my scopes, they are done outpatient at the hospital, Mayo Clinic. I will certainly talk about not having anesthesia. I didn't realize there was a choice. I remember once a long time ago a GP tried to perform a flex sig on me and didn't use any air and couldn't get around the first turn -- OUCH! I always found it fascinating when I would be awake during the colonoscopy procedure watching and seeing my colon. Weird, eh? I guess that comes from thinking about it all the time, this love/hate relationship with that part of my body.

I figure next year I will be paying, between premium and deductibles and 40% copays to max out of pocket of $5,250, around $12,666. I can't imagine what will happen in the future. That's almost as scary as the disease. Between blood work twice a year, seeing the gastro 3 times a year, my gastro and depression meds, yearly mammogram, seeing my shrink for meds, I use a lot of healthcare for a pretty healthy woman. And this summer, I fell and broke my wrist. That was nearly $32,000 (which my insurance paid like $23,000 and I paid $10) and three months of lost income.

Okay, enough of this pity party!!!!
Posted 12/21/2015 12:47 PM (GMT 0)

Coffeemate said...
Plagiarizing ima's thread from last year, a colonoscopy every year may not be absolutely necessary unless you have dysplasia. And if you are going to get a scope, it is much safer to not use anesthesia (if you can tolerate it), since propofol can also be risky.

https://www.healingwell.com/community/default.aspx?f=38&m=3116202

“Therefore, at this time, most gastroenterology societies recommend that patients with at least 10 years of pancolonic ulcerative colitis undergo a surveillance colonoscopy every 1-3 years (depending on the society)...”

“Colonoscopy every 1 to 2 years with biopsies for dysplasia...”


Great information. At least I'm not the only one trying to weigh the risks and benefits of delaying procedures.

I've never had dysplasia. I did have a 10 mm senssile polyp in the cecum on my first scope with this GI back in 2008 or so. But, again, no dysplasia. Adenoma, I think is what it was called. Pre-pre-dysplasia???
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