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Crohn's Disease
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Posted 6/16/2012 5:48 AM (GMT 0)
Hey all...I'm newly diagnosed with Crohns (just this week actually!)...I originally thought it was UC, hence the username. I'm taking 4.8g of Asocol HD/day and my doc prescribed 6mp this week because I told her I was not doing great last week...but I've been feeling better (by better I mean 2-4 BMs/day, usually twice in the morning and twice at night) so I haven't even taken the 6mp yet....kinda wanna see how I feel in the next week or so.

I'm pretty bummed out about the whole thing...but the good news is I've always had these annoying canker sore flare ups in my mouth and I never understood why I got them. Every time it happened my wife would tell me I picked up herpes somewhere...so at least she can't say that anymore...:)
Posted 6/16/2012 2:52 PM (GMT 0)
Well, not sure that Crohn's is better than herpes, but at least your wife won't catch it from you!

I'm sorry that you are upset about the Crohn's diagnosis. I'm not sure that one is worse than the other, but it is good to have a better picture of things so you can focus your thinking on medications.

I've never taken 6MP, but from what I've read the mesalamines are just not that great at getting Crohn's into remission. And I say that as someone who has been on mesalamines for 11 years, with one 3 month stint on prednisone and another 3 month stint on entocort. I think 6MP is worth a shot. The variations in our disease (week to week, day to day) can be tricky and I think serve more to confuse us than anything else. Think long term - I'm sure you'd like to feel better every day, not just every other week or so.

And welcome to the forum!
Posted 6/17/2012 2:57 PM (GMT 0)
Hey UCHater, welcome to the forum. I am deeply sorry you are suffering.

I agree with Kazbern about the 6mp versus mesalamine. The mesalamines are supposed to target the small intestines, if I am remembering correctly, so if you don't have disease present there then the likelihood is that it isn't doing much to help you (again, assuming I am correct saying it only targets the small intestine). I was on Pentasa for a month, and saw absolutely no difference, so my doc switched me to Imuran, and that started having an effect. This disease is mutable, so trying to manage it can be tricky.

I wish you the best! Here is to a speedy recovery and induction to the world of remission : )
Posted 6/17/2012 3:18 PM (GMT 0)
Actually, C6H1206, most mesalamines are good for inflammation in the colon. Pentasa is the only one that I know of that is effective in both small and large bowel. However, Crohn's involves inflammation of the submucosal layers and the mesalamines are like topical meds that treat the internal lining of the colon/small bowel. They work pretty well for ulcerative colitis, not so well for Crohn's. Well, at least not well enough to induce remission according to many studies. I've personally found them to be helpful; I'm pretty sure I have never been in complete remission though.
Posted 6/18/2012 2:48 AM (GMT 0)
Really! I did not know that, thanks for telling me :) I feel like I learn one thing with this disease, and then it turns out that fact is wrong and now this is right etc. I am very glad mesalamines are working for you, even if only on a small scale and not a full blown remission-inducing scale.

Remission is still something that seems so exceptionally vague to me. My GI says I am in remission, and granted I feel 1000x better than last year, but I still inherently know that my intestines AREN'T normal intestines. Is remission just "hey good job kid, you aren't evacuating your body weight in waste everyday!"? Do Crohnies ever get back to pre-disease digestive health? Sorry if I am taking this thread off-track.
Posted 6/18/2012 10:24 AM (GMT 0)
To me "full remission" means normal digestive health with no or minimal drugs, and yes: some chron's people get there.

Re 6MP, all my docs have been very hot on that (and/or imuran) + some of the new biologic drugs (like cimzia, remicade) as new and exciting weapons for people who have resisted other treatments. I had a very bad alergic reaction to 6mp: paralyzing joint pain. Apparently this happens about 2% of the time. If you have this with 6MP, I'd recommend against trying imuran since it will liekly come back worse with trying the second, related drug.

Having tried almost everything, I think (in addition to those named above, also humira, budesonide, methotrexate, asacol, pentasa + 3 major surgeries), for me the most successful drug that I have come back to over and over again is good old prednisone. Some people don't tolerate steroids well, and they have some worrisome long-term consequences... But for me it has been the one drug that reliably beats back a flare up!

in any case: good luck and feel well!
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