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UC "burns itself out?"

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Ulcerative Colitis
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Posted 3/14/2015 3:31 PM (GMT 0)
I had an appointment with my GI last week. Next step is Humira and I'm patiently (or not so patiently) waiting for the mail-order pharmacy to ship me my starter pack of no-poop darts. I sure hope this stuff will help.

He said something that intrigued me during my appointment as we were discussing all the biologic choices I had. He said that sometimes, if a biologic can get someone into a long remission, that the UC with "burn itself out" and the patient won't have any more issues. He said that, of course, that means one would need to go off the medication that spurred the remission for some period of time to see if this was the case but that one could return to the meds should a flare pop up.

Anyone ever hear of UC just "burning itself out"?
Posted 3/14/2015 3:51 PM (GMT 0)
remission do sometimes occur for no reason, and the longer a remission lasts the less likely a flare.

but i would use a maintenance dose of 5-asa and anti-inflammatory foods if withdrawing the biological during remission - and only in the 2nd or 3rd year of a renission
Posted 3/14/2015 4:00 PM (GMT 0)
The only thing I am sure of...The colonoscopy prep sure "burns" itself out.
Posted 3/14/2015 4:01 PM (GMT 0)
Nope. I've heard it mentioned but I don't feel like it's happened to anyone I've heard of. Too bad, I'd love mine to burn itself out. After ten years, it get tiring. We've had members who have been dealing with this illness and ups and downs for fourty years.
Posted 3/14/2015 4:19 PM (GMT 0)
Never heard that one. You could go into remission for 10+ years and symptoms could return. You just never know when it will hit again but it eventually will.
Posted 3/14/2015 4:25 PM (GMT 0)
Yep, UC does on occasion burn itself out, particularly as we get older. Certainly doesnt happen to everyone, probably not even more than 20% of people tops, but I know it does happen.
Posted 3/14/2015 4:52 PM (GMT 0)
Makes me wonder if it's actually UC or just colitis from something else that can make itself burn out...I wish my crohn's colitis would burn out and my IBS since my CD is now in remission, but now I'm dealing with this stupid IBS-C predominantly sometimes D. :(
Posted 3/15/2015 2:06 PM (GMT 0)
I've heard of this - don't know how true it is tho. I just wish I was one of the lucky ones to have it burn out!
Posted 3/15/2015 2:48 PM (GMT 0)
The longer the remission does not necessarily mean less chance of a flare. I had a 10 year remission, a friend a 25 year remission. Both of us had horrific flares resulting in surgery. UC is completely unpredictable.

Sue
Posted 3/15/2015 5:19 PM (GMT 0)
never heard of it, but I've heard of eventual rectal sparing.

That's one term I'd cling to as hopeful. Weird a doctor would even suggest it.

q
Posted 3/15/2015 5:28 PM (GMT 0)

quincy said...
never heard of it, but I've heard of eventual rectal sparing.

That's one term I'd cling to as hopeful. Weird a doctor would even suggest it.

q

Well they "suggest" it because theyve obviously seen it in clinic on more than one occasion. Its not like they are making it up : p
Posted 3/15/2015 5:32 PM (GMT 0)
of course not....but interestingly, it's the first time I've heard of it from any members here since 2003...so from my perspective, it's a freaking weird thing for a doctor to say to a patient (IN MY OPINION).

q
Posted 3/15/2015 6:11 PM (GMT 0)

quincy said...
of course not....but interestingly, it's the first time I've heard of it from any members here since 2003...so from my perspective, it's a freaking weird thing for a doctor to say to a patient (IN MY OPINION).

q

I see. Its probably not something they talk about much with patients, since they obviously dont want to give false hope. I was told while I was shadowing two GIs, so I wasnt in a doctor-patient context
Posted 3/15/2015 6:21 PM (GMT 0)
shadowing as in you're a doctor?

Have you heard of rectal sparing as being the burning out?

Most patients suffer burn-out of a different kind, however.

q
Posted 3/15/2015 6:29 PM (GMT 0)

quincy said...
shadowing as in you're a doctor?

Have you heard of rectal sparing as being the burning out?

Most patients suffer burn-out of a different kind, however.

q

Not quite yet, just as an undergrad for now, but I have med school interviews coming up next week, so soon perhaps : p That being said, I do keep close tabs on IBD research and talk to these GI at least once a week so Im pretty up to date.

Rectal sparing isint really the same thing as burn out. Rectal sparing is really only seen in 3 instances; 1) paediatric patients, 2) patients with fulminant disease, and/or 3) after usage of rectal meds.
Posted 3/15/2015 6:34 PM (GMT 0)
I know it wouldn't be the same as burning out, just wondering if it could have been used as a tern meaning the same.

Thanks for the extra info, however.

hope the interviews go well for you,
q
Posted 3/15/2015 6:42 PM (GMT 0)

quincy said...
I know it wouldn't be the same as burning out, just wondering if it could have been used as a tern meaning the same.

Thanks for the extra info, however.

hope the interviews go well for you,
q

I see, but no, they are definitely different terms! And thanks! : )
Posted 3/15/2015 7:37 PM (GMT 0)

suebear said...
The longer the remission does not necessarily mean less chance of a flare. I had a 10 year remission, a friend a 25 year remission. Both of us had horrific flares resulting in surgery. UC is completely unpredictable.

Sue

Sorry Sue, but I was speaking of medical fact, based on studies that found the most significant predictor of not flaring during the study was the length of prior remission. Epidemiological studies based on many people. You may dispute the reason for the association, but you cannot dispute facts based on one or two counter examples.

Your thinking is just not correct.
Posted 3/17/2015 11:53 AM (GMT 0)
Best is to never stop taking probiotics and eating a good, healthy diet even in remission. Will benefit your health in general. That way a future flare up if it occurs can be managed much more successfully. I believe the only way of fighting UC is not looking at it like a mystery or ambush or something "that comes and goes" but a logical case of cause and effect. That's how to beat it.
Posted 3/17/2015 12:38 PM (GMT 0)
^^^^^^^
dynomite !
Posted 3/17/2015 12:54 PM (GMT 0)
I would love it if this were true! I have no idea if it is or not. But I can't imagine being infirm when I am older ( or just plain tired ) and having to deal with a flare! I am not looking forward to that! ;-(

By older I mean 80s and 90s if I am as lucky as my mom, which I doubt!
Posted 3/17/2015 3:40 PM (GMT 0)
My mom had UC, the older she got the more issues she had with getting C-Diff, in and out of the hospital with it the last couple of years before she died. She died at the age of 82 from a brain aneurysm not as a result of her UC or the constant battles with C-Diff. She didn't even get her UC until her mid-late 60's (I got sick with my crohn's in my early 20's and this is the first time I've been in remission with my crohn's -though since my remission my IBS has taken over, not near as bad as suffering with my CD but still not anything worth celebrating-).

I will guarantee that I will not live into my 60's, 70's or 80's with my disease because I will make sure of it. I'm struggling with still not being quite right with my digestive tract due to the IBS and should I flare up again with my CD I will not handle it well at all mentally because I'm already teetering with having such a long flare with my crohn's and developing IBS and lactose intolerance on top of everything else. My digestive tract issues has destroyed me forever, getting sick again will be my last straw.

Don't get me wrong, I'm thankful that the Humira has gotten me this far but honestly who wouldn't throw their arms up in the air under my circumstances. Not looking for sympathy just sharing what being sick has done to me mentally...IBD has burned me out.
Posted 3/17/2015 4:11 PM (GMT 0)
I hear you! I was thinking this morning that I would rather go thru chemo for cancer than deal with this life long struggle!

I hope that a new drug treatment, cure comes out soon!

There has got to be something coming!!

If it gets that bad there is always surgery there is always that!

I will go that route if i have to once i retire! I just have to make it to retirement!
Posted 3/17/2015 5:32 PM (GMT 0)
Oddly enough, I had a colonoscopy about two weeks ago. I've had two clear colonoscopies, and oddly enough, I think this GI -- who didn't dx me with UC -- doesn't think I have UC anymore.

I was on Remi for a little over five years, and had a clear colonoscopy going off of it, and now just on maintenance meds -- Pentasa 500 mg x 3. This is the same doc who told me to throw away my meds and start on Lialda...for no known reason. :-)

Anyway, after the c-scope, he entered my room and said that everything was clear and maybe I won't need meds anymore. I was a little groggy, so I'm not sure if I heard him correctly. I have no symptoms really, so maybe mine has burned out...I know that's not true, but I can hardly wait for the follow up appointment with him to see what he says. He just always looks at me with such a puzzled look...I often wonder if he thinks I'm faking it. It's crazy because I was so sick before I started Remi. Hmmm.....

Posted 3/17/2015 6:04 PM (GMT 0)
Omg Lonie, i hope you are the one!!!!!!
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