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meds after surgery....?

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Crohn's Disease
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Posted 4/2/2011 1:56 AM (GMT 0)

I just had my first resection on 3/22.  actually healing quickly - but really missing my ileocecal valve! I had an abcess and what my surgeon described as a big knot of intestines removed. he also said that there was zero signs of active crohns left..  my question:

my GI wants me to get back on humira as soon as possible.. my surgeon says the studies on tnf-alpha blockers after surgery to prevent/delay the disease from coming back are limited and inconclusive.

from the point of view of those of you that have had surgery.. do you think going med free after surgery is a bad idea?

these are serious meds, and i can rationalize using them to improve my quality of life during periods of active disease.. but to use it with no sign of the disease.. and for the rest of my life?(or until a new/better option is available)  

would love to hear your experiences..

Posted 4/2/2011 2:42 AM (GMT 0)
My doctor told me to not go back on Remicade until 6 weeks post-op, I believe. It probably won't hurt you to go on earlier, but it will slow the healing process a bit.
Posted 4/2/2011 2:57 AM (GMT 0)
I think it's a bad idea to be med free. I just had my resection and I went right back on pentasa ASAP.
Posted 4/2/2011 3:07 PM (GMT 0)
I agree that med free is a bad idea. I stopped the azathioprine I was taking in autumn 2009 from advice of my GI as had been taking it for 14 years at that time and had been in remission for 6 years. Bad mistake. Autumn last year started really bad flare and am now on Humira, azathioprine, pred, plus numerous supplements and other drugs to counteract side effects of Humira and after 4 1/2 months things are better and going back to work next week but things still not back to how they were before the flare. Wished I had never stopped the azathioprine.
Posted 4/2/2011 3:14 PM (GMT 0)
Yes 100% it is a bad idea to go med free after surgery. I did that after my first resection and ended up having to have another one only 3 years later. So please, do get back on meds.

I take Asacol and it is working great for me. Hugs!
Posted 4/2/2011 10:10 PM (GMT 0)
I agree with the others, med free is a bad idea. After surgery my wounds were not healing properly and were taking a long time because of the Crohns. Once I started the Humira they healed very quickly and I've been feeling 10x better than w/o it.
Posted 4/2/2011 10:19 PM (GMT 0)
I think there is a difference between going "med free" and going back on meds within 4-6 weeks of the surgery.

My GI, and my surgeon, both felt like being right back on the meds immediately would slow down healing. So, we waited about 4 weeks to start on maintenance drugs - 6mp. He did not want me to immediately return to Cimzia, which I had been on before the surgery, in hopes that the surgery + 6mp would = longtime remission. He felt confident that was what worked for most patients (and, honestly, most Crohnnies I know in person has had that happen). Course, I have to be the exception (as so many of us are on this site!) and my disease was active before I was even back at work. I'm not sure Cimzia immediately after the surgery would have helped or not. It was immediate.
Posted 4/2/2011 11:02 PM (GMT 0)
I never stopped my meds. I was on them in the hospital. I had my resection on 3/4 and have been taking the same medications everyday since then. I would not go med free ever. I spent 10 undoing the damage that was done from 10 years of being undiagnosed and untreated. I will not do that again. I do have to say that my most recent resection was due to adhesions and scar tissue from previous surgeries not active disease, so staying on my meds is purely for maintenance reasons.
Posted 4/8/2011 2:38 AM (GMT 0)
thanks everyone for your input.. i have been on the entocort since the surgery, but my GI wants me to start humira within 4 to 6 weeks. i guess my question was more about if i should continue the humira at that time - or wait until i have moderate/severe disease again. i wouldn't even mind taking pentasa for the rest of my life, as im sure my GI will want to stop the entocort when i see her next week - ive been on it forever. i just feel that humira is such a 'high-risk' drug to be taking when there is no disease. pentasa on the other hand, has very few, if any, serious side-effects. but it sounds like those of you who speak from experience believe that the benefits of drugs like humira for prevention of disease still outweigh the risks of the drug.
thanks again, all!
Posted 4/8/2011 3:06 AM (GMT 0)
I thought I could control my crohns post resection with diet and have to say I am rethinking .....18 months and a few flares later I have to wonder what damage has been done. I think the FODMAP diet is helping but suspect what most if you seem to have worked out already that meds are necessary to retain remission and prevent more surgery. working out which meds is the hard part ;)

living in New Zealand earthquake central (oops there goes another shake as I type ...) had stressed me out a bit and thrown our city into chaos. My specialist is taking a break as he himself is unwell which is a REAL worry as he is a wonderful man and active in crohns reasearch. I hope to see him soon though (May) and will talk about what meds next - very intertested in LDN .... and I really don' miss my ileocecal valve ;)
Posted 4/8/2011 4:12 PM (GMT 0)
I had my TI resection in 97. (2 feet total including valve) Right away I started back on 4g/day pentasa. It was the drug to use at the time. I haven't had spreading or even positive biopsies since. My new gastro has told me that's highly unusual and he's kept me on the pentasa even though he thinks it's antiquated. If it's not broken....
I do need to be dairy free now and watch my diet, don't drink etc. but going back on pentasa has worked for me.
Posted 4/8/2011 9:04 PM (GMT 0)
For a few weeks I went med free until I had some complications clear up and then went on Pentasa that alone was not enought o keep my disease at bay ended up with another fistula surgery 6 months later and imediatly as my wound inf cleared back on humira bi weekly again wasnt enough had to go on it weekly and then had pentasa and entocort added again...
Posted 4/9/2011 9:00 AM (GMT 0)
I was specifically told by the Crohn's Dr I saw for my 2nd opinion.. one of the "big shots" at Mount Sinai here in NYC to NEVER take any of the biologics because I had stricturing Crohn's and Remicade or Humira might make things much worse for me (reg GI was considering them). He also told me that I didn't need to take any meds after my resection because I got DX with Crohn's so late in life (mid 50's) and the large stricture I have took sooo long to get that way... that it would be many years for something like that to happen again..

I was stunned to hear this. I continued to do my own research on line reading as many medical briefs I could sneak thru back doors on line to read.. and have decided to stay on the 4gms of Pentasa... Yea they are hard to swallow, but I do believe that they have helped maintain me until I can have my upcoming resection next month. Needless to say I am going to stay on them as long as Shire Cares keeps sending them to me. My regular GI is supporting me in my decision and so is my surgeon. I can't imagine why any Crohn's Dr would recommend for any of us not to be on maintenance drugs. JMHO
NY Veggie
Posted 4/9/2011 3:18 PM (GMT 0)
NY Veggie I was told the same thing after my first resection (which happened to be an emergency). The obstruction appeared after a 20 year remission med free. So after first resection I didn't take any meds. I had to have another resection only 3 years later. Now I stay on my Asacol (sister med to Pentasa) all the time. I don't get why they say that. Crohns is a chronic and incurable bowel disease. By the way I have the stricturing type of Crohns also. Hugs!
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