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Entyvio- Better but Not Quite Remission

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Ulcerative Colitis
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Posted 2/20/2019 8:02 PM (GMT 0)
I have been on Entyvio now for over 6 months. While I have noticed improvement(no blood,pain, less urgency) and my recent scope looked good I am still having UC symptoms. I usually have to go to the bathroom 2-3 times in the morning and it can be slightly urgent and on the loose side. This certainly doesn't feel like remission or the way I felt before diagnosed. Is it possible for the inflammation to be gone and still have symptoms? Does it take some time for the colon to function normal again?
Posted 2/20/2019 8:09 PM (GMT 0)
This does not sound like remission especially since there is urgency. I wonder if you still have inflammation in the beginning of your rectum/colon that is not seen on the scope.
Posted 2/20/2019 8:31 PM (GMT 0)
Definitely doesn't seem like complete remission so Its possible. I will take a another look at the scope results.
Posted 2/20/2019 11:17 PM (GMT 0)
It is possible for the inflammation to be gone and have symptoms. Not blood, but other IBS type of symptoms. about 15% of patients do.

The key here is whether "looked good" you report for last scope was just pretty good, or was clean with no inflammation, even on biopsies.

if the inflammation was truly gone, you need treatment of IBS-like symptoms
Posted 2/21/2019 12:25 AM (GMT 0)
Did biopsies show no inflammation?
Posted 2/21/2019 12:38 AM (GMT 0)
Is entyvio the only medication you are on for uc? Maybe addinv a second med will get you into a true remission.
Posted 2/21/2019 10:08 PM (GMT 0)
Thank you for all the responses. Overall my quality of life has improved but I was hoping for better results. The biopsies did showed no inflammation. Doc thinks it may be IBS.

I have been on lialda for years before the Entyvio but I recently stopped it to see if it would make a difference. I have always wondered if this medicine was actually doing anything.
Posted 2/21/2019 10:30 PM (GMT 0)
Have you ever tried probiotics? There is some research on IBS and probiotics. The ones that come to mind are S. Boulardii and L. Rhamnosus GG (Has to be the "GG" variety) but a lot of trial and error is required as everyone is different.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4239510/

https://www.optibacprobiotics.co.uk/learning-lab/blog/s-boulardii-probiotic-gets-ibs-health-claim-canada
Posted 2/21/2019 11:38 PM (GMT 0)
I would try probiotics and diet mods for IBS, and then light use of immodium, and then the IBS meds.

Neither Lialda or Entyevo will affect symptoms one bit if inflammation is gone. They are both anti-inflammatory.

Some folks have IBS-like GI symptoms after inflammation is managed/treated. It sucks if you got that, but the anti-inflammatory won't touch it no matter how much time you give them.

good luck
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