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surgery vs medication for children

Thu, August 09, 2012 3:15 PM

my daughter was diagnosed with UC back in February. The docs have had her on sulfasalizine, 6mp and recently we began Remicaid infusions. We had some hope that the Remicaid was working as she finally got completely off steriods about two weeks ago. We began seeing minor amounts of blood in the stool shortly after she got off of them and now are getting close to full blow flare.

I fear we are coming to the eventual conclusion that she will need surgery. I would like to hear from any parents whose children have had the surgery and how that has turned out for them. The docs are desperately trying to control it with medications, but I truly wonder if we are just chasing our tails and doing more harm then good.

Any input would be appreciated.

Jennifer

jsmithpe
Joined Aug 9, 2012

Tue, August 28, 2012 11:16 AM

Reply posted for jsmithpe.

Hello! I'm a mom to my daughter who is 9, and has had the surgery. We were very lucky to have such wonderful Dr's along with us on
this horrible journey.In Nov 2010 just a day after my daughter turned 8 she begun showing signs of UC, we wouldn't get that diagnosis till 16 days later in the hospital.
We spent 25 days in the hospital, within 6 months we has tried all the meds. Remicade being the last one, however my daughter GI Dr told us as a father
and a Dr, he wouldn't use it for his own child. ( The side effects are bad, which most Dr's may not tell you.) Or we could do the surgery. I was scared for my child.
I just wanted her back to before she got sick. I was tired of her being sick. I don't know how many time she got stuck with needles, need blood transfusion, and was IV (pic-line) fed, because she refused to eat. In May of 2011 my daughter was transferred to a hospital almost 2 hours away. She received her surgery in 3 parts. In Dec 2011, a year after her Diagnosis, she had the last surgery ( the reversal) I could not have asked for anything better. She currently only take a daily Flintstone Vitamin, and is doing everything she always wanted. We do notice from time to time, she takes more breaks, and rest, but we can deal with that.
I hope you have a good Dr who will help you along the way as we did. AS I look back I do not regret doing the surgery. In my daughters case it was the best thing for her.
I knew in my heart, and in my daughters heart at that moment surgery was the best.

tltt2004
Joined Aug 28, 2012

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