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In remission, should I stop my meds?

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Crohn's Disease
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Posted Today 2:10 PM (GMT 0)
Hi All,

I was diagnosed with Crohns about eight years ago after a long battle with what my doctor initially diagnosed as IBD.  I have been in remission for about seven years with no sign of inflamation (as seen from my colonoscopy).  I've been on asacol and 6-MP this whole time and my doctor is thinking of stopping my meds completely.  I feel great.  Although I don't want to be on such powerful meds for the rest of my life, I'm just scarred of getting sick again.  Getting sick was such a horrible expereience (with numeous hospital stays) and I can't afford that now that I have a full time job and a mortgage.  I'm 27 years old and recently married.  I also don't want to be on meds if I get pregnant.  Does anyone have experience with getting off meds that would like to share some advise with me?

Posted Today 2:16 PM (GMT 0)
My personal opinion is if isn't broken, don't fix it. I only take Asacol. It is a very mild medication. I tried to stop it once and wound up getting sick again very quickly, went back on it and my health returned. Also, as far as getting pregnant, there are many women on this board who have had Remicade, Imuran and 6mp babies and all have been perfectly healthy. A healthy mom makes for a healthy baby. JMHO! Good luck!
Posted Today 3:32 PM (GMT 0)
Don't do it! I stopped taking my meds when I felt better after my first flare. I was feeling good and sick of taking all the pills. I think I was also in denial.. Anyway it wasn't immediately after I stopped that I got sick. But when I got sick again it was hell! If it is working, let it do it's job. You have a lot going for you right now, why risk it? It is not worth it in my opinion.
Posted 12/1/2007 7:48 AM (GMT 0)
It's a tough call. You have been on these meds so long that you might be OK going off them. Or at least off one of them...the 6MP.
Posted 12/1/2007 8:33 AM (GMT 0)
if you want to stay im remission, stay on the meds.  If you want to be sick again, come off.
Posted 12/1/2007 10:08 AM (GMT 0)
Hi, I am also am in remission am I still take all my meds. In my opionion you should not stop taking you meds.
Posted 12/1/2007 4:44 PM (GMT 0)
The way I look at it is that your meds could be keeping things in check and you may not know it. Things can be very microscopic and doing damage, but we don't know it. The main concern is scar tissue because no amount of medication will ever heal that. So if you have some underlying disease activity that goes untreated you will be developing scar tissue. Down the line that will form a stricture which will require surgery. Of course you can still get scar tissue on medication but the odds are better if you stay on meds. And as stated earlier, there are lots of medications that are OK to take while pregnant. But the only ones who can make these decisions are you and your doctor.
Posted 12/1/2007 7:04 PM (GMT 0)
NO do not do that! Stay on them! Take lots of vitamins and then just be extra healthy on top of taking the medications. Coming off of them with remission is long down the road!!
GOOD LUCK and keep us all posted!
Posted 12/1/2007 7:37 PM (GMT 0)
I would stay on both meds until you decide to try for kids. Even then I would keep the Asocol. Even if you feel okay without the meds, there could still be inflammation damaging your gut. You can't fix that once it happens, but you can avoid it if you take maintenance meds.

I'm in the same boat right now-- remission w/ 6mp and pentasa. I stayed on both for several years of remission and just stopped the 6mp to start thinking about kids.

Good luck.
Posted 12/1/2007 8:15 PM (GMT 0)
The best advise I can give you is to stay on your meds so that you will stay in remission. Going off of your meds could so easily un-do this nice little remission you've found yourself in. It would be better to accept that your body doesn't function the way a "normal" body does and look at the meds like the help that gets you to the "normal" level. It's not "extra" that is poisoning you. I've had 2 perfectly healthy babies while taking all of my meds. It is possible to do. That's not the decision that every woman would make, but it was best for me. I wish you much continued health!!!

Stef
Posted 12/3/2007 1:55 PM (GMT 0)
thank you all for your comments. I think I'll get a second opinion and another colonoscopy before I made my decision!
Posted 12/3/2007 5:16 PM (GMT 0)
I had to learn the hard way. After all, I had a 20 year remission w/o medication after a resection.

So when the Crohn's returned and we got it into remission I was still scared enough to continue w/the Imuran and Pentasa for some 9 years. I got tired of 20 pills a day this past spring. So I quit the 16 Pentasa a day. But I kept on w/my Imuran. Once in a while I'd get a few mild hints that maybe the Crohn's wasn't so quiet as we thought and I'd go back on 8 Pentasa a day. But I finally quit all Pentasa early this fall. And I am now in trouble. No question that the Crohn's is active now.

I was always told what medication and dosage got you into remission was the dosage you needed to stay on to maintain remission. I think the Crohn's has finally managed to convince me of that.

Do as you please. Just be ready to accept the consequences. Good luck whatever you decide.
Posted 12/3/2007 5:25 PM (GMT 0)
I'm with CToo on this one. I too took a "medication vacation" and am regretting it now. I stopped taking my Pentasa (the only med I am on) and it has come back to haunt me. I was so excited that I was eating salads again---now that is gone!

I would get a second opinion...I have not heard many doctors pull a patient completely off their meds
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