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Scared that my symptoms may be back

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Crohn's Disease
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Labradorite
Veteran Member
Joined : Sep 2009
Posts : 1332
Posted 4/26/2020 6:43 PM (GMT -7)
Hi all,
it’s been a while, hope you are all doing okay.
I’ve been in remission about 4 years now on Remicade and low dose of 6mp. Pretty much zero symptoms for the majority of that time. about 2 months ago I stopped 6mp after a discussion with my doc, seemed like the right choice. Fast forward, maybe unrelated, I’ve got this diffuse kicked in the gut type aching pain. I did have quite a bit of birthday cake recently to celebrate a family member’s birthday and it seemed to come about after that. Now feeling like junk a week later. How long do you guys wait to get a drs opinion when you are feeling off? Has anyone had an experience with flaring after stopping 6mp and what did you first notice?
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73monte
Veteran Member
Joined : Mar 2007
Posts : 2235
Posted 4/27/2020 3:54 AM (GMT -7)
First off, curious to know why you and your GI decided to discontinue taking 6MP? Especially considering the possible/likely benefits of combination therapy.

As for your symptoms. Of course it's so hard to say. There are so many viruses, food born illnesses etc. I would try simplifying your diet for awhile. Perhaps go with a low residue. See where you're at after a week or so. Plenty of fluids as well. Hopefully things calm down with that, but if you start to have secondary symptoms, fever, fatigue, fluish, then it's time to get checked out.

In the meantime, it might be a good idea to just get a full blood work up done, see if that shows anything. Hope you get to feeling better soon.
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NickyFurlano
Regular Member
Joined : Apr 2016
Posts : 45
Posted 4/27/2020 5:14 PM (GMT -7)
I got a resection 7 years ago double resection and have been drug free ever since. I was nearly dead before my operation. It was a scheduled operation. I take herbal stuff but wormwood capsules seem to work best if I don't "feel right" Sometimes I take wormwood capsules followed by grape seed capsules.
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Labradorite
Veteran Member
Joined : Sep 2009
Posts : 1332
Posted 4/27/2020 7:01 PM (GMT -7)
Thanks guys for responding!
We decided to discontinue it because I was only on a tiny amount of it-25mg. At a higher dose it made me extremely nauseous and I couldn’t eat. The 25 mg that I have been on for 4 years is considered too low to work on crohns but was used to prevent the formation of antibodies. So it was debatable whether I was even getting any benefits from it considering that long term it raises (however small) side effect risks. I’m still on Remicade and my most recent scope last year showed no sign of crohns. We’ve been having an ongoing conversation as to when and if deescalation would be something to try. Doing a lot of reading on newer GI publications about deescalation as well as having my remicade level and blood work done we decided it was worth trying based on the results- I fit into the category less likely to have trouble.

Gone back to bland foods and hoping that does it.:/
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