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What is remission?

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Crohn's Disease
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Posted 12/1/2015 4:17 PM (GMT -8)
What is remission. When I first started Remicade I felt great. One or two bathroom visits in the morning, that's it. No pain or discomfort. Then it stopped working. Bathroom visits increased. Switched meds to Humira. The starter dose felt great, one or two bathroom visits. After that starter dose it was like injecting water into myself. Didn't last long on Humira, complete failure. Now on Entyvio, starter felt great, into my sixth infusion feel decent but my number of bowel movements are increasing all throughout the day. I eat something and almost instantly I have to go to the bathroom. Besides all that, what is remission. Is remission only having one or two bowel movements, not feeling pain or discomfort. Being normal again, like peeps that don't have Crohn's. What is a flare as well, is a flare constant bathroom visits, and pain and discomfort. Could I be flaring every other month or two. Not really sure the definition of remission and flare............................................... Sorry for being all over the place with this but............. Just gathering my words to put together her.
Posted 12/1/2015 4:44 PM (GMT -8)
Remission is the absence of any detectable disease, even microscopically and by biopsy. It may or may not be correlated with symptoms which can be coming from Crohn's, but also may be functional....like as a result of fast transit and bile dumping from surgeries, short bowel syndrome. IBS and slow motility, infection, surgical adhesions, etc. You might be in a constant flare, or the biologics only help somewhat, but I don't really know. You should talk to your doc about this. I have bad IBS and it got worse after surgery, so I have symptoms every day, but we believe my Crohn's disease has remained in remission since surgery. Currently I have c.difficile, which is probably causing symptoms, but I also deal with motility issues all the time. So only your doc on the basis of biopsies, scans and lab work can determine if you are in remission. I hope that helps.
Posted 12/1/2015 8:33 PM (GMT -8)
I believe 'true' remission is also referred to as: The white buffalo, a unicorn, a white whale, a brass ring...

:)

Actually both my GI and myself classify me in remission. Generally once or twice a day BM's, no mucus, no blood, no urgency, formed stool. However I argue that although this sounds awesome, I am not without the disease in any way. Food can bring about symptoms (IBS perhaps). I sometimes have 'uncomfortableness' in my colon area though it passes and more than anything I am not 100% as was prior to the onset of Crohn's-colitis. So if this is remission, I'll take it - but I say I am 95% remission. That last little 5% seems to be unreachable or unattainable... I suspect this holds for many others as well.
Posted 12/2/2015 2:50 AM (GMT -8)
At its simplest remission is an absence of disease. So if your GI does a scope and you're in remission, there should be no visible sign of Crohn's disease, e.g. inflammation, ulcers. Most of the time remission correlates with fewer symptoms, but not always. It's not unknown for people with active disease to have few symptoms and people with latent (inactive) disease to have lots of symptoms.

A flare-up usually means the disease has returned or got worse and usually the symptoms get worse as well: more diarrhoea, pain, bleeding, fevers, etc. In your case it did sound like the biologics stopped working very quickly, as happened with me: Remicade sort of did something after my 1st infusion - after that I may as well have had saline infusions for all the good it did.

Have you had any tests recently to assess where your Crohn's is at?
Posted 12/2/2015 5:31 AM (GMT -8)
I got scoped in July\August ish, he said it looks better then what it was. The blood tests still show inflammation as well. When I first started Entyvio bowel movements decreased, one, two, maybe three. But I could go out enjoy myself and my family. Now when I go out its like I need an emergency plan for Bathroom locations and always having that on my mind being miserable. I mean don't get me wrong it could be a lot worse like the beginning before being diagnosed, going 14 + times a day, plus blood and mucus. So this is better, a lot better believe me. Just stressing with the constant thought that what is remission, is this remission, does it get better. I know it can get worse that's for sure. Do you ever get to go out and just never have to worry about it (Crohn's) and just enjoy life. Does remission get you that...... Blah blah blah I feel like.
Posted 12/2/2015 5:39 AM (GMT -8)
he said it looks better then what it was

That's... really vague. If he didn't say anything more than that, no wonder you're confused. Reading between the lines, however, I'd guess that there was inflammation which the doctor was downplaying (I literally can't stand that "it looks worse than it really is!" cliche - every time somebody has said that to me, it's turned out every time that, no, it actually really was just as bad as it looked). In other words, you're not really in remission. Even the blood tests back that up.

I don't really know much about Entyvio. Any possibility of increasing the dose or adding another med like azathioprine/6MP/methotrexate into the mix?

Edit: Actually, just ask your doctor if your last colonoscopy showed any inflammation. I think I may have read in between the lines wrong - I really don't know what he was trying to say.

Post Edited (NiceCupOfTea) : 12/2/2015 6:54:52 AM (GMT-7)

Posted 12/2/2015 5:57 AM (GMT -8)
Im also taking 6mp but could that just stop like Remicade did...........
Posted 12/2/2015 7:17 AM (GMT -8)
Anything can stop working unfortunately. 6MP isn't as strong a drug as Remicade and I'm guessing it's not doing a lot for you at this point. Methotrexate is stronger and might be worth switching to.

I'm guessing from everything you've said that your inflammation has been partially controlled but not totally. So increasing Entyvio and/or adding methotrexate (or, possibly, raising the 6MP dose) might be enough to knock the remaining inflammation on the head. Rather than have another colonoscopy, your blood test results and symptoms can be used as a guide to improvement.

I'm not a doctor, though, so this is really a conversation you ought to be having with your GI.
Posted 12/2/2015 8:57 AM (GMT -8)
If it helps any fignewton, I can tell you that now, for the most part I can go out for a full day either at work or with friends and not worry or even think about Crohn's disease...

So it can happen. But to be honest I think it is exceedingly rare. I would perhaps try to accept that you may not ever be 100% again... but you can get close with a bit of luck on your side.
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