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Crohn's Disease Forum » Ulcerative Colitis Forum » UC-starting humira-12 year old


09-23-2012, 04:56 PM   #1
Jakenmic
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Join Date: Sep 2012
Location: Commerce, Michigan
UC-starting humira-12 year old

Our son was diagnosed with Ulcerative Colitis about 5 years ago when he was seven. We have seen multiple GI specialist due to a recent move and just finished with another round of tests at the Mayo Clinic in Rochester, MN for one final expert opinion.

Before Mayo, the GI doctors started off with Sulfsasalazine, then moved into Prednisone during a severe flare and when that didn't do the trick they decided to startup the Remicade infusions. This worked and our son stayed on this for about a year when it was decided to back off Remicade and try some other maintenance drugs that were skipped as a result of the severe flare episode. The other meds were Asacol, Azathioprine and Imuran. He also had other rectal medications used for treating Proctitis.

After meeting with the Gi Specialist at the Mayo Clinic, it was determined we should move towards Humira. The injections just started late last week and both my wife and I are nervous on starting up another TNF blocker again at such an early age with the side effects that come with them. We wonder if we should push harder for surgery, but hold off because of the finality of such a decision.

We're telling you this to see if there are others out there with a similar dilemma and what was decided on your end. We are also looking for some support from other parents who have a child with ulcerative colitis.

This site looks like we are in the right place and we hope to hear from you soon.

Thanks
09-24-2012, 03:50 PM   #2
Nosick
 
Join Date: Feb 2011
Location: Ohio
Did the maintanance drugs work after stopping Remicade? It's probably too soon to consider surgery. I beleve I read somewhere that it is not at all unusual for people as young as your son to go into an extended remission.

It is always so awful to hear about someone so young with this disease. I wish him the best.
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20 year veteran of the war on Ulcerative Colitis. From sulfa drugs to biologics. Went on an alternative treatment in 2010 that has turned the corner for me.

CCherbal, Psyllium Seed Powder (2 big spoons per day), Max EPA Fish Oil
09-25-2012, 10:35 PM   #3
samilou
 
Join Date: Jul 2011
Our daughter is 12 and dx a age 8 and have tried everything and doctores are trying to push us into surgery as we have been in the hospital for 3weeks now on tpn. We talked to a surgeon and didnt like the answers of questions we had about surgery not a 100% cure to uc like our gi was saying. We are currently looking at doing fecal transplant next month in tampa bay fl. before any decisons on surgery.
09-27-2012, 06:22 PM   #4
2thFairy
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Join Date: Sep 2010
Location: Dallas, Texas

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Surgery for UC is never a 100% cure, as some find out after surgery that they had Crohn's disease all along. However, most people with UC are considered "cured" after removing the colon and do quite well.

I am in no way pushing for surgery for anyone---far from it---especially with young people.
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"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
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