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Crohn's Disease
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Posted 9/20/2007 8:01 AM (GMT -6)
I had surgery about 7 weeks ago for Crohn's, so as I understand it, I technically don't have active Crohn's right now.  However, my doctor is looking to start me on Humira since my Imuran isn't working.  Are any of you starting new drugs even though your Crohn's isn't active?  
Posted 9/20/2007 8:08 AM (GMT -6)
My doctor put me on 6-mp after my surgery as a maintenance drug. I couldn't stay on it though so I'm only on pentasa now. When you say the Imuran isn't working what do you mean? Do you have any disease activity or was it just causing problems?
Posted 9/20/2007 8:15 AM (GMT -6)
The doctors have done metabolite level testing on me to see if I am actually metabolizing Imuran at helpful levels. Those have come back showing that I do not have enough of it in my blood to actually do any good. Sorry, I didn't clarify. I actually haven't had any flareups since surgery (although that wasn't long ago), so it is just maintenance. However, Humira seems like an extreme maintenance drug...??? I'm a little scared to be on it for a long time.
Posted 9/20/2007 8:44 AM (GMT -6)
I'm facing the same thing right now. Personally, I won't go on Humira for maintenance, because of the high cost for me if nothing else. But I agree, I feel it's pretty extreme for a maintenance drug. The problem is what are your options? I wonder if using 6MP instead of Imuran will make a difference? I know Imuran never worked, but 6MP did for me.

My problem is my liver, we have to do a bunch of blood work before we can decide if I can go back on 6MP.
Posted 9/20/2007 11:04 AM (GMT -6)
 

 My doctor also wanted me to go on imuran after my surgery.  I did not agree as I was symptom free and imuran does not guarentee anything.  He did suggest I quit smoking (which I am on again off again) and said that it is probably just a matter of time before it comes back.  He did like the fact that I work out 3 times a week and kayak on weekends. (said it was probably keeping me in remission).  Anyway it's been 3 years since my surgery and I feel great.

If the crohns does come back I will re-think the imuran but in the mean time I do not see the point of inviting a host of other problems to try and combat something that may or may not come back.

Do what's right for you.  Weigh the pro's and con's and maybe look into other aspects of your life to help keep you in remission.  Good luck.

Posted 9/21/2007 4:27 AM (GMT -6)
Hi, Even though you had surgery for the crohn's and your fine now. You still have it. It does not ever
go away. I had surgery a long time ago and I am on Remicade which is keeping me in remission.
Thats why they are putting you on humira to keep you in remission.
Posted 9/21/2007 5:15 AM (GMT -6)
Hi How bad was your surgery and how much surgery did you have? I am wondering why your Dr. wants you on Hum. You have no disease now have you had test to see what is going on in there and can they really be sure there is no disease .Hum. would probably give you a longer remission but who knows. At least the Dr. is giving you a chance to make that decision. lol gail
Posted 9/21/2007 5:55 AM (GMT -6)
I have had 3 resections, the shortest time I went with no symptoms after surgery was about 4 weeks. The longest about 1 year. The maintenance drugs are in place to keep anything that might be going on microscopically. It is the rare person who is not on some form of maintenance drug. I would not be comfortable not taking any maintenance drugs, because even if I can't feel something going on, it might still be there. I want to be treating everything and not letting it get to the point that I'm in pain before I call a doctor and start seeking out treatment. The sooner each minor flare is treated the less scar tissue and damage is done, meaning the longer between surgeries.
Posted 9/21/2007 7:45 AM (GMT -6)
Since my last resection the only maintenance drug I am on is Asacol. It helps to keep the inflammation down. Its working great for me. I personally want to save the heavy guns for when I really might need them. I am feeling, for the most part, pretty good, so for me I will stay with the lighter meds.
Posted 9/21/2007 9:37 AM (GMT -6)
I had my ostomy reversal 3 months ago. Unfortunatly my CD has returned and I was on pentasa as a maint drug. The GI said that Pentasa is the least effective (all I recall is a 4 in the percentage that he gave me...could have been 4% could have been 40% that it helps I cant recall). I now have a fistula and I will get my first doeses of humira today. I hope to at least have some of this abdominal pain lessen by Monday when I start work....or at least have this fistula stop audibly farting
Posted 9/21/2007 11:11 AM (GMT -6)
After my last resection, my GI put me on remicade, 6 weeks after. I had a bad reaction to it, so I only use steriods right now.
However, he told me for him it was normal practice to put patients on maintenance drugs following resection. My opinion is,
how are we ever going to know whether resection can work to put us into remission, if powerful drugs are used from the out
set. That having been said, I've never really been in remission following any surgeries or drugs!!
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