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My son's story.

My adult son has had Crohn's for at least 10 years. The biggest struggle for the last few months however has been peri anal abcesses. He has a currently has a fistula and is scheduled to have a seton drain placed on Friday. The surgeon wants him to start Remicade. He spoke with his GI today who gave him the list of side effects and the issues that can ensue if you discontinue it. He told him that when he decides to take it, he will be taking it "forever". I wasn't there to hear the discussion but he is very concerned about taking anything "forever". He was hoping that he could discontinue it after the fistula healed. He was told that there are a variety of side effects that can happen when the drug is stopped; acne, asthma, etc. etc. How does one go about making this type of decision? He feels he is faced with a loose/loose proposition.
 

xJillx

Your Story Forum Monitor
Hi Annie and welcome! I am sorry about your son's current struggles with his Crohn's. Also, needing to make a big decision about his treatment doesn't help matters.

Remicade is part of the biologic treatment family. These are the strongest treatments available and they do wonders for many. However, it seems that people can eventually build up a tolerance for these treatments, making them no longer effective. Sometimes it can take months, sometimes it can take years. Therefore, if you start a biologic, you should stick with it until it no longer works for you anymore. Because if you stop taking it, and try to take it again in the future, it may not work again. So, if your son beings Remicade, he should continue taking it in hopes it will keep him well for many years, and he won't have to worry about changing treatments for a long while.
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome! I'm so sorry to hear your son has had to deal with this for a decade now :(

As he is having issues with abscesses and fistulas, I thought I'd point you in the direction of our new abscess and fistula support area.

Again, welcome. I wish you all the best :)
 
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