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Colonoscopy. Every two years?

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Ulcerative Colitis
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Posted 3/16/2023 7:51 AM (GMT -8)
Hi

Had a good appointment Tuesday with my new GI.

During the appointment he said “ we will do another colonoscopy in two years. Every two years.”

I said, “I thought every five years?”

He said “no. People with IBD have a much higher chance of getting colon cancer than the general population, so I recommend we do it every two years for my patients with UC”.

Past two GIs (both I fired…lol)…neither ever said this.

Does what the new GI is saying…does that sound right?
Posted 3/16/2023 8:13 AM (GMT -8)
I get colonoscopies every two years, to monitor for colon cancer. But in my case, my mother had colon cancer so I am at a higher risk than the average IBDer. I have seen people post here that IBDers don't have THAT much extra risk than the general population.

As much as colonoscopies put me through the wringer, I watched my mom die of colon cancer.... Let me just say that it's worse than having a colonoscopy every two years.
Posted 3/16/2023 8:19 AM (GMT -8)
My doc also said every two years for colonoscopies which was a change. I thought it was every 5 years too, but a few years ago I guess the recommendations changed to 2 years?
Posted 3/16/2023 9:12 AM (GMT -8)
I started with every 3 years, then two and now every 1.5. The time adjusted from 3 to 2 was around the 20 year mark. Five years ago I started 1.5...
I would never have done every 5 regardless.

q
Posted 3/16/2023 9:55 AM (GMT -8)
My GIs have always said 2 years. I think there’s a timeline? Maybe after 5 yr diagnosis it goes to 2 years? Not sure what it was before that. I’ve always been 2 yrs or less but could be because of the flare and then checking and then they found polyps with a pre-dysplasia. And my age. I see my GI next week and expect him to schedule my next scope. My last one was in October 2021.
Posted 3/16/2023 10:59 AM (GMT -8)
My GI has never given me a colonoscopy, even when I was hospitalized, and has never suggested I have one. Which seems odd to me. Maybe because I'm 31?

I've only ever had a sigmoidoscopy and abdominal ultrasound. For all we know I could have Crohn's. Sigh.
Posted 3/16/2023 11:03 AM (GMT -8)
Every 2 years here too & I've only had UC for 6 years.
Posted 3/16/2023 1:17 PM (GMT -8)
After a cumulative total of 10 years of active disease, my GI has people get colonoscopies every year. So, I'm on the yearly colonoscopy protocol.
Posted 3/16/2023 2:25 PM (GMT -8)
My current GI says 5 years if you have been in remission for those years. For his patients who flare frequently he scopes every two. My previous doctor scoped every 2 years. I was diagnosed in 2013 and have had 4 scopes, last one in 2019 so I will l have my next one next year.
Posted 3/16/2023 2:57 PM (GMT -8)
Every year after 20 yrs of having it. No more since I had surgery
Posted 3/16/2023 4:39 PM (GMT -8)
Some recommendations from various sources:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6700690/

https://www.gastrojournal.org/article/S0016-5085(21)03093-6/fulltext

https://www.asge.org/home/resources/publications/journal-scan/issue/updated-guidelines-on-endoscopic-surveillance-and-management-of-colorectal-dysplasia-in-inflammatory-bowel-diseases

https://www.bsg.org.uk/web-education-articles-list/ibd-articles/surveillance-colonoscopy-for-inflammatory-bowel-disease-why-when-how-and-what-next/
Posted 3/16/2023 4:55 PM (GMT -8)

magicbeans said...
My GI has never given me a colonoscopy, even when I was hospitalized, and has never suggested I have one. Which seems odd to me. Maybe because I'm 31?

I've only ever had a sigmoidoscopy and abdominal ultrasound. For all we know I could have Crohn's. Sigh.

You need a colonoscopy and a new GI (not necessarily in that order). If you had crohns it might have shown on the abdominal ultrasound. A good GI ought to have done a colonoscopy for the initial diagnosis at least.... I've had a colonoscopy every time the doctor needed the information to determine my next treatment step (especially since symptoms are often not always correlated with the extent or location of the inflammation).
Posted 3/16/2023 5:32 PM (GMT -8)
One doctor told me it is recommended annually

Another doctor said every two years, it is the new standards

I do it annually just to be in the safe side
Posted 3/16/2023 7:34 PM (GMT -8)
My doctor said at least every 2 years for me. Although if I keep improving we might be able to move it to every 3. (Wishful thinking there....) If I start having issues its every 8 months to a year. 👿👿

But my colorectal surgeon scopes my Hartman's pouch yearly.

Fun times.

Clo
Posted 3/17/2023 2:51 AM (GMT -8)
My doc says every 2 years.

MagicBeans -- how long since you have been diagnosed? I am surprised that you have never had a full colonoscopy. Age doesn't matter when it comes to UC (or the risks that come with UC) ... you need a full scope. If your current doc doesn't do them, you might want to find a new doc.
Posted 3/17/2023 6:52 PM (GMT -8)
After you've had UC for 7-8 years, you have to start getting them every 2 years.
Posted 3/18/2023 2:07 AM (GMT -8)
I was diagnosed at 16 and am now 33 and have had 11 scopes so far. I think my doctor said after 10 years you need them every 1-2 years but if my last one was good then he is ok pushing it 2-3 years (usually 3 since I have been abused by overscoping). The whole disaster was like 2010-2011 and I was admitted to 3 different hospitals in my town and 4-5 scopes were down within less than a year. Each doctor “needed” his own scope which I look back on in pure hatred since you only really need one on a very sick colon.
Posted 3/18/2023 6:03 AM (GMT -8)
5 in a year, that is grim! I've had two within 6 months of each other but I was quite happy about it because the nurses (=gatekeepers to the doctor) didn't believe I could possibly be flaring on infliximab (it was like they'd never seen it before) so eventually when i started to look like I was dying they phoned the dr who ordered an emergency colonoscopy the next day. I was like FINE STICK A CAMERA INSIDE AND YOU'LL SEE (which they did...60 cm of inflammation thank you). I changed hospitals shortly after that. Rant over. I will have my year 8 colonoscopy soon. My GI said after that probably not for 5 years if everything is fine, which seemed a bit long, but not going to question it at this stage.
Posted 3/18/2023 8:08 AM (GMT -8)
https://www.crohnscolitisfoundation.org/what-is-ibd/colorectal-cancer

The CCFA backs up the recommendation that I listed above:
"Patients who have had symptoms for eight years or longer should get a colonoscopy every one to two years."
Posted 3/18/2023 1:48 PM (GMT -8)
I know but I am in Europe so have to follow the protocols here..
Posted 3/19/2023 10:01 AM (GMT -8)
I wasn't responding to you. I was just sharing information.
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