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Remicade failure, what does it feel like?

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Ulcerative Colitis
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Posted 6/6/2014 2:55 AM (GMT 0)
So I've been on remicade since October and it's been awesome. I have no idea what I'd do without it. I was in so much pain and I'm back to better than normal. At least I thought I was. Lately I've started getting one little clump of mucus once a day with a tiny bit of blood and at least once a day I poop like a ton. It's definitely not as bad as it was before I started remicade. No cramping or urgency really and I'm not pooping like 30 times a day.

I was just wondering for those of you who have been on remicade in the past and it failed for you, what was it like? Does what I'm describing sound familiar? And this is for people where remicade worked at first. Not people who quit after 4 doses because it never kicked in. My next infusion is July 11th so that's what like a month away? I had a fiber one bar on Monday and a giant Biggby frozen latte on Tuesday so that could be part of it I think but I was just curious. I pray it's not remicade losing its effect. I have no idea what I'd do.

And because I have a feeling someone is going to ask, no I haven't had a colonoscopy since I started remicade. I had one a week before my first infusion and I'm not sure when my next one will be. Probably around October when it has been a year on the remicade I would think.
Posted 6/6/2014 3:07 AM (GMT 0)
My son has been on Remicade for almost 5 years, and it has been a godsend to him too....stopped his big flares.
But certain foods will make his belly hurt and cause worse loose stools...maybe 3 to 4 times in the morning,
Mostly greasy things,,like Spareribs or some fried foods....but then he will drink a lot of water.
Just watch what you eat.
Posted 6/6/2014 10:46 AM (GMT 0)
When I developed antibodies to Remicade, I would be OK for about a week after the infusion and deteriorate from there until the next infusion.  They even upped the dose for the last months I was on it without success.  Mary
Posted 6/6/2014 11:13 AM (GMT 0)
Caitie,
I've been on Remi since April 2013. A real godsend for me too! within 2 months I was totally symptom free and back to pre-UC kind of life! All was well from July til Feb. then in Feb of this year I started seeing a touch of mucous and/or blood. Had me very worried, but as days and weeks went by it didn't feel like a typical flare from the past. No urgency, no increase in frequency, no pain, no energy drain etc... just visible small amounts of blood and/or mucous. thought perhaps Remi was just wearing off as I was near my next infusion (Feb) but that infusion did nothing to change what i was seeing.

Talked to my GI who wanted to take a look so scheduled a colonoscopy. This went on for 2 months with not getting worse but also not getting better! Then I had my next infusion in April and the next day nothing.... NO blood , NO mucus... back to normal... and have been since then!

Did have my colonoscopy 3 weeks after not seeing any symptoms... and was told no visible ulceration, considered full remission!

So, I think, at least in my case... you can have a few symptoms without it meaning it doesn't work anymore or that you will fall into full flare... Hope your story turns out like mine and that things settle soon and you can go back to enjoying Remission!
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