I have an unusual history in that I had surgery when I was 26 and had 4-ft of ileum removed (all of the Crohn's) and post-surgery took nothing for maintenance. Now at 65 I have had a recurrence of mild Crohn's. I know the accepted wisdom is maintenance drugs will delay recurrences, but is the experience that when Crohn's recurs it is worse, and thus without maintenance drugs your chances increase for another surgery or increased suffering? In other words, since we are already doomed to recurrences, and if they are NOT worse without the maintenance drugs, why bother with the huge expense and bother?

Second question to which I don't think there is an answer: any stats on what is the most effective (and cheapest) maintenance drug?

Many thanks.

I don't think there is such a thing as a most successful maintenance drug. Each person's crohn's is different and responds to different meds. For me, it was a combination of remicade and azathioprine. The ASA versions of drugs did nothing, some benefit from 6MP but not enough to really talk about. For me, the current meds list is pretty much necessary. I never saw remission without them. Yours doesn't sound like it has been that bad, you might not need too much.

Well ASA med are the mildest but not usually the cheapest. Cheapest I would guess would be generic Imuran. (Not sure how the cost compares to 6MP). Effectiveness, there really isn't an answer. Typically the ASA drugs are weaker and going up immunomodulators like Imuran are stronger with biological at the top but everyone is different.

Hi there! Like has been said, the best maintenance med(s) depend so much on your sort of IBD.

wantok said:

In other words, since we are already doomed to recurrences, and if they are NOT worse without the maintenance drugs, why bother with the huge expense and bother?

There are so many different forums of IBD, but there aren't any guarantees with these darn diseases - in my case my most recent recurrence proved to be a lot worse.

From my dx through the next 20 yrs, my flares were pretty similar (severe, but responsive to steriods then maintained well with 6-MP after my mom got my GI to start me on that instead of the endless cycle of steriods/taper/flaring... ah, the "bad old days"!). Then after years of being controlled on 6-MP I went off and got a 3 year med-free remission.

Then I had a flare (while not on maintenance meds) and developed blood clots (DVT and PE, misdiagnosed for a dangerous amount of time as I didn't have "classic" symptoms) - hematologist says it's not uncommon to have blood clots with flares.

I have no idea if more mild cases of IBD have less chance of becoming a lot more severe "out of the blue"... I'd be interested if there have been any studies on this.

I've found CCFA's webinars to be so helpful with my own understanding of this darn, diverse thing called "IBD" (the "What's Best for Me?" one goes over lots of maintenance meds): http://www.ccfa.org/resources/webcasts.html

Thanks a lot for your helpful comments, Inky Stinky. I'll definitely check out the webinars.

First, congrats of going without problems after surgery for 30 years and nto requiring any maintenance durgs.

Second, everyone is different. Also, the financial costs of e.g. azathioprine are small (20 bucks per 100 tabs). I would rather be off aza, but I have tried two times and I realized aza helps me stay in remission. I'll try again to get off it.

Third, I know people who had surgery and really need biologics thereafter (and/or before) to live a normal life.

Fourth, the most effective (statistically) is a combination of Humira or remicade together with azathioprine. This is also the most invasive and costly treatment. The least costly maintenance meds are azathioprine/6mp, although you also need to factor in blood tests every 4-6 weeks which are much more expensive than the meds itself.

FrozenGirl said:

Well ASA med are the mildest but not usually the cheapest. Cheapest I would guess would be generic Imuran. (Not sure how the cost compares to 6MP). Effectiveness, there really isn't an answer. Typically the ASA drugs are weaker and going up immunomodulators like Imuran are stronger with biological at the top but everyone is different.

ASA for Crohn's has been shown to not be effective. It just does not affect the small bowel enough. But it is an effective maintenance drug for UC.