Surgeon said no Crohns

Well, there are some who get away w/no maintenance meds after surgery. I was one. But not by any real choice. My resection was in 1978 and the only med they offered me was asulfidine which made me more sick than the Crohn's had so I went basically untreated when my Crohn's was active which is why I ended up having a resection so soon after my first, continuous flare started.

Given today's meds and how well I have responded to the mildest (mesalamine) as well as Imuran  there is no way I would go w/o a maintenance med after a resection today. Go w/what you are comfortable with. If your gastro won't script a maintenance med, ask your family doctor to script it if that will make you feel more confident. Dr May in the old CCFA Ask the Specialist forum always told us the med and dose that got us into remission was the med and dose to keep us in remission.

Well, I guess first of all, you will ALWAYS have Crohns, it does not go away, and never will until we find a cure.  Your symtoms may subside but its always lurking around in there.  What your surgeon probably ment is that he took out the disease section, and that you now have no active Crohns.  I personally am not on any maintenance meds because none have worked for me so far, and my surgeon took me off Humira because he feels Im way too long for the long term side effects, which I agree with and plus it wasnt doing anything for me anyways.  I would have to say tho a maintenance med/s are a must for most people, if they can find one that works.  I have no inflamation or active crohns but Im still in the bathroom 10-20 times a day, and I still get pain after eating...neither of my resections have done anything to help me.  But Id say to talk to your GI doctor and see what he says, most dont tell you to get off your meds.

When I was diganosed my GI told me I had to take Salofalk, that I'd be all cured in a matter of months and that Crohn's could return in like 10 years time but that it probably wasn't going to.

Needless to say that I should've switched my doctor back then. There are a lot of GIs that don't know what they're talking about. And surgeons know even less. So I'd have to agree with the others, you should talk to your GI.

As far as the stopping your medication part goes I don't know what I'd do. Maybe you could try it and see how you feel. Honestly, it would be great if you didn't have to take medications but you have to be really careful because even if you feel good your CD could be active. So maybe try staying off meds and do check-ups often?

But you know what? You have to see how your body's going to react on lowering your steroids dose. No one can guarantee that you won't be feeling worse when lowering your dose. A surgery is a shock for a "healthy" body and how could it not then be even worse for us Crohnies?

Hope everything goes well!

My surgeon who is great also told me after bowel resection that I no longer had chrons. What he meant was that he had removed all the inflamed areas. He did not mean it would not come back and certainly did not tell me to no longer take my meds. My GI dr has me on mainenance drugs to prevent a flare up. Chrons is genetic and that gene does not go away. Also my bowel resection was in June of 07 and in Oct 07 I had a colonoscopy and the GI dr. told me the chrons was back (though not badly) around the resection site. He also told me he had never seen it when it did show back up there. However, with maintenance drug I am better and Just in Jan had another colonoscopy which shows only mild chrons. Take the adivce of your GI dr.

Thanks for all your replies.
I thought it was strange when the surgeon told me to stop all my medication, I was that unsure I asked him again the following morning.
I said to him about continuing with maintenance meds and he replied saying , erm good question........ I'm 99% sure that your GI will stop your Crohn's medication due to the fact you don't have any more Crohn's. I will see you in 6 weeks time with your GI.

I really thought he wouldn't of said that because he works along side my GI every week in a very reputable hospital here in the UK which apparently my GI specialises in Crohns and Colitis. Anyway, Today after reading your views I carried on taking Pentasa, stopped the Azathiroprine. If My GI does confirm to stop taking meds I will go and see my GP.

Thanks all.

Saying to someone after surgery that "there is no crohn's" is about providing the patient with a psychological boost. Sort of the same way many physicians treat cancer patients. How many times have you heard that "they got it all" only to see the patient have a recurrence a year or so later. The key is, that your outlook can affect your recovery, so I think surgeons paint a deliberately rosy, if vague picture.

I remember after my first surgery that my surgeon told me they had got it all. Months later, back in hospital, I raised this with a medical internist and he just smiled and confirmed what I always in my gut knew -- there is no such thing as getting it all. Just because they can't see it doesn't mean it isn't there microscopically.

I've been told twice by two different surgeons that "they cut it all out". In one case, all my meds were stopped by the surgeon. Less than three weeks later, I was in serious adrenal failure and my disease was again active. When I arrived for an emergency appointment with my GI he took one look at me and asked, "what have they done to you now?" Back on IV steroids, flagyl and azathioprine to try and get it settled down again.