What exactly is “remission”?

I was diagnosed in 2016 with UC. After going on Humira in the fall of 2016 there were weeks and months where I was “normal”...one firm stool movement every morning without urgency. Didn’t happen often. But it did indeed happen for stretches at a time.

Now I am back on Humira again, and, I was reading another post online somewhere about UC...(I forget where)...and the doctor being quoted in the article said something like “Remission can be attained...that is, on average, one or two solid or semi solid movements a day, plus one watery diarrhea a day...”

Huh? That’s remission?

Can someone clarify?

Remission is a clinical absence of intestinal inflammation. Inflammation causes the majority of our symptoms, so absent that we do feel a considerably bit better. Even within a remission, we can have IBS like symptoms or extra-intestinal manifestations like joint pain or rashes.

For me, remission is one poop a day without urgency or pain. It's some form of solid that's highly variable. Occassionally, I poop twice in a day depending on what I ate and my stress levels.

Rusty Barr said...
I was diagnosed in 2016 with UC. After going on Humira in the fall of 2016 there were weeks and months where I was “normal”...one firm stool movement every morning without urgency. Didn’t happen often. But it did indeed happen for stretches at a time.

Now I am back on Humira again ...

Why did you stop Humira and for how long? And why are you back on it again?

Remission is different for everyone. When I am in remission I go 1-3 times/day, formed, no urgency or other symptoms.

Right now I am in a weird place. I go 2-4 times/day, usually pieces, occasionally diarrhea, no urgency or other symptoms. Doc says maybe IBS but he upped my Remicade to the max so don't know. I was seeing occasional blood in Dec/Jan/Feb but that cleared up with steroid enemas so I think I still have mild inflammation. Won't know til we do a scope sometime this year. Worried a bit that there is still lingering inflammation from my last bad flare in 2018, but UC isn't affecting my life so I am ok for now.

According to your doctor, I have never been in remission. This despite having a clear colonoscopy and calprotectin less than 5. My gastroenterologist considers me to be in remission.

I regularly have up to 4 BMs per day, depending on how much fibre I ate the day before. I don't pay attention to consistency as long as it's not diarrhea. I think i have scarring in my sigmoid colon (narrow lumen) that makes it impossible to produce "normal" poops.

For me the first sign that I'm flaring is abdominal pain. No pain = remission.

The last time I was in remission, I still had IBS. I had 1-2 BMs per day, formed. No urgency. Life was normal. I could eat almost anything, except wheat (never was able to recover from that). Was going to the gym regularly, started bodybuilding again and working full time.

I had a long conversation with a GI doctor online once, during my last remission period. He said that UC damages the bowel in many patients, causing scarring. The nerves down there stay sensitive for a long time. It might look good on a scope but the lining is still "touchy". You might have days where transit speeds up because the nerves are sensitive, especially if you're stressed out, and other days when it slows down. Also the gut ecosystem takes a long time to recover after severe inflammation.

People with sustained remission (many years) often recover from even the IBS, but new remission still has a lot of gut sensitivity. That was certainly the case for me, and my remission lasted two years or so.

I think as long as there's no simmering or hidden inflammation, your scope looks good, you're going 1-2x per day, you're eating well, and you've got your life back, that = remission. I know clinical remission is defined differently but... if life is normal without any hitches then I think you're good. The occasional diarrhea is to be expected. Remission doesn't mean your gut is perfect now.

complete confidence in farting anywhere, anytime -


TT

poopydoop said...

damo123 said...
It would be interesting to see how the person with inactive IBD but crippling joint pain or terrible uveitis or PSC would react to being told they are in remission. IBD is a systematic disease.

Well my sister has all of those (ankylosing spondylitis, crohns and uveitis) and she can quite happily accept that one is in remission while another is active (since different drugs have different effectiveness on the 3). She doesn't consider the ank spond, which was diagnosed first, to be an EIM of IBD (in fact ank spond is known to be associated with inflammation in the terminal ileum and some doctors don't regard that as crohns disease).

Ok but of course that is just one single case. But glad she is good with it. Equally I know of a person whose scope has been clear last 2 times but has chronic joint pain not DXed as anything but an IBD EIM. She definitely is not happy to accept that one is in remission and something else is active and more importantly neither are her Rhuemy and GI.

ipoop -- that was interesting info about "lead pipe". Not sure what is going on with me. When I have diarrhea it's always when I first wake up (not every day), rest of BMs are small turds or pebble like. Once in a while it seems like it's approaching normalcy then goes back.

However, I can freely fart lol (well except I don't trust it first thing in the AM)

poopydoop said...
But you're also making an argument based on one person.....

I think most colitis patients consider their colitis in remission when there is an absence of bowel inflammation.
Absence of symptoms would be symptomatic remission. (As opposed to endoscopic or histologic remission)

No the point I’m making here is that you can’t judge the generality of the condition on one case and simply rebutting your point. Senior members on here seem to have the opinion that “if it is true for me or worked for me then it’s true for everyone”. I would definitely say that if people are experiencing EIM that affect quality of life then neither they nor their GI consider them to be in remission and more importantly treat to the target of reducing those EIMs.

Question about EIMs -- is it possible that they aren't all related to UC, but rather separate disorders that exist on their own? If so, then even if you get one disorder under control the others could still be active because they have different triggering mechanisms.

What are "athalagias"? I tried google and nothing came up

VanJordan said...
Is the lead-pipe change permanent?

The scaring never fully goes away. Heal a small amount, maybe? Fortunately, scar in the large intestine isn't something that causes strictures and blockages, like happens with crohn's and small intestines.

As Old Hat says, yeah lead pipe or stove pipe isn't a new thing. Rather it's been known of for many decades, and an obvious finding in xray.