HealingWell
Search Close Search
☰

Flex sig to confirm remission - worth it?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/3/2022 10:09 PM (GMT 0)
Hi,

I’ve been doing great on my maintenance meds for months - had what seemed to be a very mild flare in late Sept. last year (or was it hemorrhoids? Still not sure) that resolved very quickly - and am thinking of getting a sig to confirm a true remission.

The last colonoscopy I had was April last year which showed mild inflammation. I’m thinking it might be prudent to find out if my meds are working as well as it feels like they are. My only concern is whether a scope could aggravate my colon. I’ve only ever had scopes when flaring.

Any advice would be appreciated. Do y’all get scopes during remission periods? How do they affect you?
Posted 4/3/2022 11:05 PM (GMT 0)
I rarely get scopes. Every time I am scoped, the damage it does to my bowel triggers a flare instantly and predictably. Other people are different... they can be scoped regularly and it causes no problems. For other reasons that I don't want to bring up here because they are too controversial, I also don't trust scopes as they are currently done.

We are often encouraged to get them because of "cancer risk", but the risk of getting cancer from UC increases only very marginally at the 10 year mark, and scopes themselves are not without risk. 1 in 1000 colonoscopy patients suffers a perforation. But since you are talking about a sigmoid scope, it's not nearly the same risk. For myself, I won't even do a sigmoid scope because it's instant flare territory, especially if they take biopsies.

However, you have to decide what's right for you. If you have a history of polyps, strictures, or odd factors to your case, or if it's been a really long time since you were scoped, then maybe you will decide to do it.

If you are in remission, have no symptoms, your blood work looks good, you can eat what you want, and your BMs are relatively normal, then why do you need a scope to see what you already know? Yes, inflammation can be "invisible"... you might not know if there's simmering inflammation... but honestly, even simmering inflammation usually shows some signs.

If your symptoms are gone and your life is normal, why mess with it?
Posted 4/4/2022 1:38 PM (GMT 0)
I've only had scopes when flaring (to assess the extent of the flare), plus a couple of sigmoidoscopies to "donate" biopsies to medical research.

Next year is my 8th year since diagnosis and then I will start the 2-yearly cancer screenings.

I wouldn't nominate a scope that I didn't need, but also won't skip my cancer screenings.

The risk of perforation depends on the state of your colon and the skill of the doctor. I have a family member who is a GI. In 30+ years of doing scopes - must have been thousands - he said he had one perforation in an elderly patient with another condition (I am forgetting what condition exactly...). In other words, your personal odds are probably somewhat less than 1 in 1000 😊

I can monitor inflammation pretty accurately with regular FCP tests, but not every UC patient can do this.
Posted 4/4/2022 1:46 PM (GMT 0)
p.s. I didn't flare from my sigmoidoscopies to "donate" biopsies. I did poop blood the next day, but I already saw on the camera (I wasn't sedated) that there's a lot of blood when they take a biopsy, so that obviously came out the next day.
Posted 4/4/2022 3:01 PM (GMT 0)
Can one ask for a limit on the number of biopsy samples that can be taken for investigation? Or is that not wise?

Poppydoop I am quite impressed about you donating for research. I didn’t know doctors did that.
And the 2 yearly cancer screenings will that be by colonoscopy or FIT tests?

I keep feeling like I get brain damage when they pluck me out for biopsies but my gut stayed fine thankfully. They can be done anytime during a flare or to take a look during remission. But I would wait till my GI specifically asks for it.
Posted 4/4/2022 3:47 PM (GMT 0)
I've probably had 100 scopings over the last 50 years, with 1,000's of biopsies. Never had an issue, knock wood. I haven't had a polyp in about 15 years, and ALWAYS have some inflammation in my rectum, even after taking every Rx known to Big Pharma.

Very minor symptoms are a way of life....
Posted 4/4/2022 4:48 PM (GMT 0)
Seeker - I'm at a research-based hospital and they're studying whether you can predict if a drug will work for someone on the basis of a biopsy - which is obviously less hassle than spending months or years trying 5 different drugs that don't work for you.
So they took biospies the day before I started xeljanz and again 4 months later when I was in remission. I thought it was cool that my colon contributes to medical advancement 😁

My understanding from their intermediate results is that there are different types of UC depending on where exactly they see the inflammation, and that that influences which drugs will be effective.
Posted 4/4/2022 5:44 PM (GMT 0)
My scopes are now every 1.5ish years. Some Ive been flaring and others not...but I've never flared from a scope. Definitely had bleeding after the biopsies...

Your call re having one...but for the effort, I'd request a full c-scope rather than a sig.
q
Posted 4/4/2022 10:01 PM (GMT 0)
If you gotta scope might as well do a full one rather than half. The preps aren’t that much different — they both are awful, IMO.

I’ve been in remission almost 5 years now and have had at least 3 scopes in that time (maybe 4?) since they found a pre-dysplasia polyp (sorry can’t recall now the exact term). I’ll be having another probably by the end of the year. They cause me no problems now beyond mild cramping afterward due to the biopsies.
Posted 4/4/2022 10:26 PM (GMT 0)
I avoid flexi sigmoidoscopies wherever possible as I find them more painful than colonoscopy.

I tend to have flexis and colonoscopies only when I'm flaring. I can't remember ever being offered one to confirm I'm in remission. Fortunately for me a faecal calprotectin test gives a pretty clear picture of whether I'm in remission or not.
Posted 4/5/2022 8:23 AM (GMT 0)
Seeker just saw your second question- it will be a full colonoscopy every 2 years. Joy.
Posted 4/5/2022 11:07 AM (GMT 0)
I am now on the every 2 years plan. You just had a scope last year so if you are feeling good and don't have any symptoms I don't see the point in having a scope just to confirm that you feel good, Enjoy feeling well. You will have many more scopes ahead of you smile
Posted 4/5/2022 12:32 PM (GMT 0)
Thanks Poppydoop. Agree the biopsy for research is a better idea to shooting in dark.
Posted 4/5/2022 6:55 PM (GMT 0)
I'm supposed to schedule a scope 6 to 9 months after starting Remicade. Not a pleasant thought, but then how do we know if endoscopic remission has been achieved? Isn't there a difference between genuine remission and lack of symptoms?
Posted 4/6/2022 11:39 PM (GMT 0)
After I was on entyvio about 4-5 months I was in symptomatic remission but a colonoscopy showed microscopic inflammation still. Had another scope about 6 -9 months after that and finally showed complete remission. However, many polyps were found with a couple showing pre-dysplasia, which I attribute to all that low grade inflammation. Haven’t found any of those since so I think the colon is pretty well healed. But I still get scoped every 18-24 months. Better safe than sorry!
Posted 4/9/2022 2:13 PM (GMT 0)
I flare from scopes sometimes, or existing flares worsen significantly. I wouldn't do it unless it's a cancer screening myself.
✚ New Topic ✚ Reply