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My niece has had UC since she was a teen. By the time she was in her late teens/early 20's she was in remission.

Until her late 30's when she got married and had her kids. Then it came back with a vengeance.

She is now 40. Last summer they put her on biologics and she ended up with a severe case of drug-induced hepatitis. They stopped the treatment immediately. For a whole month, she was on bed rest. They put her on I.V. for a while and now they want to put her on a new treatment. Chemo.

I've never heard of it for UC/Crohns but her mother reassures me that they are using it in Canada. I worry about her a lot. She is a young mom and is being drugged to death...I do not know what kind of side effects other than hair loss, weight loss, and an assortment of other issues related to the drug but with hepatitis I am scared for her...has anyone had this treatment? How did it work for you?

Also, for those of you who have tried everything, when did you finally throw in the towel and decide to have your colon out?

Who made that decision...you or your Gastroenterologist? When did you decide that all of the drugs were more harmful than helpful?

What surgery did you have? J pouch or End ileo?

Do you regret not having your colon out sooner? Do you regret not trying one last treatment?

I will be lunching with her next week and would like to have as much info as possible to be able to help her.

Thanks for your input

Sharon

Last edited by skn69
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“Chemo” covers a lot of territory, from horrific infusions that can damage the heart to a series of pills that rarely cause much trouble. Can you find out what medications they are planning? Has her hepatitis resolved (partially or completely)? What biologic was she on? They vary a lot, and it’s unlikely, I think, that they would *all* cause hepatitis.

I chose the colectomy when I couldn’t get off of steroids and still felt like crap much of the time. Steroids are the one IBD drug class that will persuade most any doctor that the clock is ticking. I wish more biologics had been available to try, but at the time it was Remicade or nothing, and Remicade failed for me.

I hope she does well - she’s lucky to have you, Sharon.

Thanks Lablover, Scott,

It's so hard to see her going through this journey...and so unfair...I would like for my experience to be useful but it this case it is not!

Any help is greatly appreciated...I will find out but here they use Remicade from what I have heard...As for the Chemo , I know that it is a class of drug and not just one so Yes, I will ask.

Thanks

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