Help Infusion being stopped and talk of another operation

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Regular Member

Date Joined Jul 2009
Total Posts : 25
   Posted 10/3/2009 6:25 AM (GMT -6)   
I am at my wits end. Went to see my team of Docs and as the third one is not working they are going to scope me and see if Imflamation is still there......If it is they are stopping the Remicade and he mentioned maybe Humira and also that 80% of patients need another operation after ten years. The conversation was all over the place really on his side. I really want to keep my bowel. Anyone any ideas? I don't live in America so I know there is more experience of Remicade and Crohn's there. Help think my mind will just give up the fight soon. I am so tired.

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 10/3/2009 3:10 PM (GMT -6)   
Go with your GI on the medications and try managing your inflammation with the SCD (Specific Carbohydrate diet) for a while to see if you can get into remission. The SCD has helped many people, but you need to spend a lot of thought on it to start with. Have a look at and

I would give the diet a couple of weeks to see if it can help you. There are some who do not fare well on the diet, so you will have to evaluate your results after a few weeks - maybe 6 or 8 weeks if possible.

Regular Member

Date Joined Jul 2009
Total Posts : 103
   Posted 10/3/2009 4:09 PM (GMT -6)   
well currently I'm also very close to surgery... have 2 strictures and 1 possible fistula ... but still feeling rather good and thus will not go under the knife yet....  now I'm looking into hyperbaric chamber treatments (I am also on Imuran, but so far no effects) ...
Since I've read some science articles regarding surgery and Crohn's I have to say I plan on avoiding it as looooong as I can because once you go down that road it never ends (resection: 30 % chance for another one in first 5 years)
so... althought I can't offer any medical advice I advise you to try and hold as long as you can and try different things (maybe SCD? or hyperbaric chamber like me? )
good luck ;)
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