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Colectomy or all these medications


Tue, February 07, 2012 6:22 PM

I am the mom of a 16 year old boy who was diagnosed with UC in June 2011.  He got very sick, very quickly and ended up in the hospital where they ended up putting him on Remicade - which immediately helped for the last five months.  Problem is he has now built up antibodies and it is starting to not work.  They want to add 6MP or mexitate to the regiment but I have read and heard about a lot of serious risks with these combinations including serious cancer risks for teenage boys.  Anyone out there with teenager that has had their colon removed or been at a similar major decision point?  I am so unsure what to do.  

FPO jrfmom
Joined Feb 7, 2012

Wed, February 08, 2012 4:27 AM

 Reply posted for jrfmom.

When I faced  the choice of surgery or risky medication for uc I decided that I would never forgive myself if I didn't try diet changes first. I didn't think it would work and my doctor had always said diet had no effect but it made a dramatic difference.

I have used scd for over 5 years and looking back  the uc has been improving ever since. In the preceding 5 years it was  gradually deteriorating. It has not gone  completely but flares are mild and I have control over them by being extra strict with what I eat and I haven't taken even a single steroid tablet since starting.

In the first year progress with uc was slow and it was dramatic improvements in more minor health problems that kept me going but looking back I could see huge improvement in the uc. If you try the diet yourself you might be very surprised about the effects on your own health and weight. It's much easier to stick to than it looks because there is no need to feel hungry. 

FPO lca
Joined Oct 12, 2008

Tue, February 07, 2012 10:35 PM

 Reply posted for jrfmom.

I am the mother of a 13 year old boy that was diagnosed with Crohn's 3 years ago.  I have been facing the question of Remicade and 6-MP for a very long time and share your concerns.  I am here to let you know that you are not the only one out there. 

FPO elaine1
Joined Feb 7, 2012

Tue, February 07, 2012 10:23 PM

 Reply posted for jrfmom.

Talk to your GI doc about how serious the cancer risk is and consider getting a second opinion. The meds combo might increase your son's cancer risk, but how likely is it that he will actually get cancer? Good luck!

FPO seattle93
Joined Feb 6, 2012

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