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Ulcerative Colitis
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Posted 9/3/2015 2:44 PM (GMT 0)
Much as I hate to even think that word, I'm afraid it may be happening. After almost ten years of remission with Remicade, I'm showing signs of an oncoming flare. Scares me to think of how many people I've seen who got little or no relief from the newer drugs after Remi stopped working. I don't want to go back to where I came from.

Had Remi levels and antibody testing drawn Monday, so guess I'll know more soon. In the meantime, please pray for me.
Posted 9/3/2015 3:18 PM (GMT 0)
Thinking of you and hoping that it's just a minor blip :-)
Posted 9/3/2015 3:52 PM (GMT 0)
Oh Judy, this saddens me to see. I will be praying for you. I've been in remission for 4 years and am on just Lialda and Canasa and I dread the day I possibly flare.
Posted 9/3/2015 3:58 PM (GMT 0)
Oh no!!!! Sending good vibes and best wishes that if you are starting to flare that your GI will be able to nip it in the bud and get things back into remission!!

That's what I'm afraid of too, being in remission and then flaring again....I hope they are able to help get things back on track.
Posted 9/3/2015 4:14 PM (GMT 0)
Hope you get good news.
Posted 9/3/2015 4:31 PM (GMT 0)
So sorry to hear your news, Judy!

I'm now in a severe flare after remission from Remicade. It's truly humbling - and very uncomfortable. Began taking Pred and cortenemas until I determine next steps.

Maybe you can nip it in the bud. Sending strength your way!
Posted 9/3/2015 5:33 PM (GMT 0)
Sorry to hear this
Posted 9/3/2015 6:31 PM (GMT 0)
Sorry things have turned for the worse. 10 years of remission is amazing. Flares are a certainty with uc, I hope yours is as short and mild as is possible because flares totally suck.

It sounds like you're on top of it. You're getting your remi levels checked. If antibodies are found, then the frequency can be increased (from 8 weeks to 7, 6, or 4 weeks) and/or dosage can often be increased (from 5mgs per kilogram to 7.5 or 10 mgs per kilogram) or switch to humira or simponi. If antibodies aren't found then you've failed anti-tnf treatments and entvyio would be your next step.

Also, did you get a stool test to make sure it's not a pathogen like cdiff?
Posted 9/3/2015 6:48 PM (GMT 0)
hoping you can turn it around fast! maybe increase remicade?

i have the same fears. i've only been in remission for about 1.5 years but just the thought of all the pain and vomiting is absolutely terrifying to me.
Posted 9/3/2015 6:52 PM (GMT 0)
Blips happen-- so I'll beam positive thoughts your way. Take things easy & be sure you get adequate rest. / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/4/2015 12:49 AM (GMT 0)
I hope it's not the case Judy!!! Thinking about you and want to hear the results. I am sure you will respond to one of the others if you need to go that route. People who respond, generally respond.
Posted 9/4/2015 2:06 AM (GMT 0)
Thank you all for the support. I don't think I have the courage to go reading on the forum right now, but I'll certainly keep you updated. I had six years of horrendous flaring, and I'm just afraid right now.
Posted 9/4/2015 3:15 AM (GMT 0)
Heck!!! This really is a terrible disease, physically and mentally draining, and you sound so frightened, I'm sending you good positive thoughts...(hugs)
Posted 9/16/2015 3:02 AM (GMT 0)
Today I got the good news that my test showed no antibodies to Remicade, so won't have to go back on the search for a med that works. I'm a lot better since my last infusion, so my blip may have been related to the three courses of antibiotics I've had since April. Keeping my fingers crossed and my Imodium at hand.
Posted 9/16/2015 10:58 AM (GMT 0)
That's good. Did you also have your remicade levels in your blood checked? If so, how were they?
Posted 9/16/2015 12:35 PM (GMT 0)
They did check the levels, and said they were good. Thanks. I'm hoping to get at least another ten years out of the Remi; I shouldn't live much longer than that!
Posted 9/16/2015 3:53 PM (GMT 0)
It's great to hear some positive news :)
Posted 9/16/2015 4:56 PM (GMT 0)
Good news, Judy! Did you have stool testing done, and are you on probiotics?

Keep us posted how you're doing.
Posted 9/16/2015 7:14 PM (GMT 0)
Good for you!! it must be a relief.
Posted 9/16/2015 8:11 PM (GMT 0)
So glad to hear that you're improving!!!!!!!!! I hope you can stay off antibiotics for at least 10 yrs. / Old Hat (35 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 9/21/2015 12:40 PM (GMT 0)
Sorry I haven't responded, I've been wasting time on my real life. The support is much appreciated.

I am taking probiotics; Align and Primadophilus Reuteri. I was on Imuran for the first year of Remi; my then-GI discontinued it because the data coming in showed that the increased incidence of lymphoma was associated with dual therapy. I take an antihistamine (Zyrtec) before each infusion. I've never had any sort of adverse reaction to the Remi.

I'm just so relieved this seems to have been a blip; I can't imagine going back to going hourly, pain and exhaustion all the time.
Posted 9/22/2015 12:36 AM (GMT 0)
So happy for you!!!'n
Posted 9/22/2015 6:18 AM (GMT 0)
Very good news. I tell people about you all the time in a very much anonymous capacity - it goes something like this:

"There are people I speak to online who have been in remission for 10 years!"
Posted 9/22/2015 9:17 AM (GMT 0)
Glad you're okay, Judy, but do people with Crohn's have longer remissions or something? There were/are several people on the Crohn's board who had 20 year remissions (usually after surgery) without being on strong meds or on severely restrictive diets.

I was hoping I'd be one of them but, yeah, that was looking wildly overoptimistic.
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