How often do you get a colonoscopy

I've had UC since 2012 and I've had one (1) colonoscopy which initially diagnosed me. I've had more flexible-sigmoidoscopies than I can count, as I always prefer those whenever it comes up.

My NH gasteroenteroligist (pretty traditional in mindset) was pretty scope-happy. I dreaded telling him I was flaring or a treatment wasn't working as that line of talk pretty much guaranteed a "well let's schedule endoscopy and take a look!". I probably had, on average two flex-sigmoidoscopies a year while a patient there. Sure they're a pain in the arse, but at least they're a quick procedure and you know right away how you're doing.

My VT gasteroenteroligist (at the teaching-hospital), I've been seeing since April 2017 and I haven't had a scope yet. I asked him and he says endoscopy is accurate but it also disturbs the gut flora and is something he's more cautious to use. He said for Colorectal Cancer screenings that's another thing and as I'm approaching the 8-10 year mark with UC then they're going to be necessary. Now, we talk about current UC symptoms, any changes since last-time, and do my current UC symptoms at all impact my quality of life. He ran a FCP and CRP over the summer when I saw blood and urgency reoccur during a blip or small flare.

Overall endoscopy is the most accurate tool gasteroenterolgists have, it enables you to see what the inflammation looks like, how far it extends, how severe it is, and take biopsies to confirm what was seen. For that reason it is the gold-standard for initial diagnosis and colorectal cancer screening. It's like having 20/20 vision, you have the best clarity. Can you tell enough to make an informed decision without endoscopy (that is with a bit less accurate data)? I think in some cases yes and in other cases no.

How are you doing? Is a pretty relative thing when asked in a typical gasteroenterolgist office consultation. If I'm doing good compared to how I was doing when I was flaring, then I am feeling great relatively. However is that doing good mean I am in a remission or that I still have ongoing UC symptoms that are impacting my quality of life? My definition of great and your definition of great might mean two entirely different things, depending on the trend of how we've been doing lately (our trend).

My general thoughts:

At the onset of a moderate or severe flare, I think it's a good idea to get at least a flex-sigmoidoscopy to assess how severe and how far in extent as it enables you to most accurately match an appropriate-strength treatment to combat your flare.

At the onset of a mild flare, I'd wager a FCP stool test or CRP blood test would tell you enough. You can hit it mildly and see if you get a response. Same goes for simmering inflammation that hasn't really changed over time, you know you have inflammation. What's a scope going to tell you other than the obvious?

To monitor if our inflammation-levels have changed over time, I am sure FCP or CRP is sufficient once or twice a year to see where you/I stand.

There's times your gasteroenterolgist might need to do a flex-sig to prove an expensive treatment is working, like after going on a biologic. As I'm sure health insurance asks for proof to go from loading doses to maintenance doses in some cases. Endoscopic changes before and after biologic use are as rock solid as you can get.

I had one in 2010 when I got diagnosed and then in 2013 again when flaring really bad and then every 2 years. I am concern about it too but in my case, it might be crohn's colitis so every time I have colonoscopy, he goes in terminal ileum with pediatric scope to make sure nothing there. Right now diagnosis is Indeterminate Colitis and we are watching to get definite diagnosis. so colonoscopy is the best tool because with crohn's inflammation can be anywhere. Plus, I am afraid about colon cancer too so I like once every 2 years.

Every 5 to 7 years.

ipoop, thank you for such an in depth reply. As your second doctor mentioned, one reason I don't want to get a colonoscopy is because of the risk for more damage and affecting the gut. Some questions:

1.) Do gastroenterologists believe the bloodwork is that relevant? I've NEVER had a high FCP or ESR test before even during my flares. My CRP has only been high twice before and they weren't even high when I was flaring. Conversely, I have had completely normal CRPs <1 when I was feeling crappy. Also by bloodwork standards I am literally perfect right now....yet I'm getting cramps I wasn't getting 3 months ago.

2.) Why have you not had a colonoscopy after all this time to see the extent of the disease? My first scope only showed 5cm of proctitis and now I have pancolitis. I wouldn't feel comfortable only examining up to the sigmoid colon....there's so much you're missing. Perhaps it doesn't change outcomes though. Do you still have to do a full prep for the sigmoidoscopies?


Perhaps since I am coming up on 7.5 years with IBD though I should get one due to the cancer risks

I had one for diagnosis in Jan 1989, one a year later, one every 3 years then one every two years. No precancer cells. Hyperplasia polyps 3 years ago, none last year.
I'm remaining at every 2 years unless it's warranted with change in biopsies or change in symptoms. At this point GI says deep remission.

Regarding your hard stools....it is indicitive of either tight sphincter IBS or inflammation. For me....I would always assume inflammation no matter how minute. Nightly enemas until symptoms improve, taper process to eventual twice a week.
I also increase vitamin C to soften stool.

Backwash colitis happens in pancolitis. If you don't have pancolitis, I'd question that excuse.

q

Michelejc also has proctitis that has no increased CRC risks over that of the general population. Pretty much follow the over 50 guidelines and good!

Retention mesalamine enemas....I use Salofalk.
The enemas treat rectum and sigmoid. They probably go a bit higher.

Common misconception is that one with location higher than rectum needn't use enemas.

q

I had a colonoscopy when I was first diagnosed in 2013, and then I was pressured into having another about a year and a half later whilst I had an endoscopy as he felt it was a good idea!! I then flared not long after that although he said he didn't feel like there was a connection.

Then last June I had a sigmoidoscopy before being put on Humira. I recommend these as they are a lot easier in my view and it was over quickly and you don't have to go through with such an intense prep beforehand.

My thoughts are every three years...personally, I think it's a bad idea every year...unless you are showing some bad symptoms. Also the stress on your body is huge and its a nice little earner for some GIs.. it is not cheap is it?