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For those who stopped their meds and relapsed + Orofacial Crohn's

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Crohn's Disease
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Posted 7/7/2013 1:13 PM (GMT 0)
Hi everyone,

I stopped my 6MP in January for multiple reasons, after having been on it for 12+ years and maintaining remission for a major part for it. In fact, since I've been off of it, I've been feeling better - no more constant low grade nausea, no more diarrhea for nothing... My only Crohn's related complaint is the spondyloarthropathy, but this doesn't come with CD flares, it has it own evolution. Anyway, here is my problem, for the last couple of days, I feel that by lower lip is swollen. I've had it in the past, when I was young and my CD was active. It's orofacial Crohn's where your lips swell and it's not pretty. Right now, it isn't bad at all, as I've learned a few tricks to make it less visible.

So here are my questions: for those of you who stopped 6MP/Imuran while in remission and relapsed afterwards, how long did it take for you to have symptomes again? I've only been off the 6mp for 6-7 months and I've been in remission forever (well, quite a few years, of course not "forever"!), can it be back already?

My other question: Anyone else with orofacial Crohn's? If so, does it usually go along with your GI disease? For me it was always related, but I am wondering if there are cases where it's different?

Thanks!
Posted 7/7/2013 4:47 PM (GMT 0)
Not really the same at all....but I was diagnosed in September 2011 with Crohn's. My GI put me on 4.8g/day of Asacol HD, and I was much better within a couple weeks. Due to lousy graduate student health insurance, after the first couple months my copays started being about $700, which did NOT fit into my grad student budget....I tried stretching my last bottle as far as I could, and went off Asacol in February of 2012, and in the first week of May 2012 I was having 8 bowel movements a day and was too weak to get out of bed (and had a really scary experience with bloody bowel movements which may or may not have been due to hemmorhoidal bleeding).

So in my experience, symptoms can come back pretty quickly after going off meds.
-BUT: I was taking Ascacol, not 6MP or Immuran. And I had been recently diagnosed, and it's debateable how well my disease was being controlled when I went off Asacol. (I did a round of Cipro, and started buying my Asacol from Canada, but after months of extreme fatigue my GI did another scope in March 2013 and found ulcerations- although far milder than when I was diagnosed).
Posted 7/7/2013 8:59 PM (GMT 0)
Are you doing any supplements or diet? I stopped my meds last fall, and am still in remission. I'm taking a number of supplements and eat pretty clean. There's some evidence that some supplements like turmeric can be as effective as pentasa.

You might want to check in with your GI if you are starting to notice some symptoms. Good luck!!
Posted 7/7/2013 9:21 PM (GMT 0)
I tried to stop 6MP a few years ago.  At first, I felt much better and had more energy.  After about 5-6 months, I ended up with an obstruction and had to be hospitalized.  I went back on 6MP.
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