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Remicade infused/young/weight gain of 20lbs

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Ulcerative Colitis
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Posted 10/24/2012 4:42 AM (GMT 0)
My daughter was diagnosed with UC three months before her 13th birthday. On her birthday she was in hospital and during that year spent 30 days in hospital with three separate admissions and her UC flare complicated with C Diff. She was eventually put on remicade and has been having for over a year every 8 weeks. She has other problems, regularly breaks bones, now has torn minescus and so she does not exercise much. She eats well and we try to eat healthy. She gained 40lb with steroids just after her 13th birthday. Now 15 she has gained 20lbs in the past year. Her diagnosis has been changed to Indeterminate Pan Colitis.

Does anybody know why other than lack of exercise? I am very concerned - she is 5'8" and weighs 260lbs+
Posted 10/24/2012 5:33 AM (GMT 0)
Hey!

I was diagnosed with Severe Left Sided UC in the beginning of August but have been suffering from it for well over a year. Currently, I am going through a ton of different medications to try and control my UC and a lot of them do cause weight gain. I look at it as a necessary evil. I would rather gain weight than be in constant crippling pain. And when I finally get this disease under control, I can start taking my life back and start losing the weight.

I can tell you that it's the cocktail of medications she's most likely on (You didn't mention how much medication she's on but I'm just guessing she takes a lot, considering how severe her UC is right now)! That is why I have been gaining weight. The only solution that I can see right now is to exercise but how can you do that when you're in constant severe pain? Just keep eating healthy and try to stay positive.

Right now, if she's taking her weight gain really hard, please tell her that she is not alone. It is NOT her fault!! No matter how healthy I eat or how much less I eat, I still gain weight from the steroids and other medications that I am on. However, considering the severity of her UC, her weight gain might be adding to the pain but I'm not sure.... That's just a guess on my part. If you haven't already, talk to your doctors about what you both can do to help lose some of the weight and relieve that pressure.

It's a long journey... but you just have to keep trying. Try different medications, different methods of pain control, foods, whatever you can do to help her out and NEVER give up. I am 22 now, but when I was 12, I was in an VERY similar situation but my first problem wasn't UC, it was Endometriosis. I know the pain and confusion and frustration she must be going through... Please send her my best wishes. And hey, if she ever needs someone to talk to, I'm always available! I can't tell you how much I wished I had someone to talk to when I was her age when I was going through all of that pain. Someone who understood exactly what I was going through... and if I can help her in ANY way, that would make me very happy! My email address is in my profile, so she can send me an email any time!
Posted 10/24/2012 2:37 PM (GMT 0)
Englishkim, I'm sorry your daughter is struggling so much with her illness and her weight. How does she feel about her weight? I think as a morbidly obese teen she should be talking to her DR (pediatrician and GI) about her weight. And I would really suggest that she do some talk therapy. Not that she is a bad person, but she is probably sad and frustrated about her weight just like you are.

As women we know that there is a lot of pressure on us to look good and to be thin. I don't think there is any easy answer when someone is 100 lb overweight to say "exercise more!"
or "eat healthy!". Your daughter really has to make a life decision here, and that's super hard to do when you're 15. That's why I'd suggest some talk therapy.

I don't think you can blame the UC meds for her weight gain. I would say that she has probably enjoyed eating without pain since the remicade kicked in, and that might be a big change for her if she was ill for a long time before her diagnosis. I don't understand what other problems you wrote about (bone fractures?) or how those are being addressed, but even with a torn meniscus she can still exercise. Bike riding and swimming are two activities that will not be hard on her knee. She should be doing physical therapy to strengthen the muscles around her knee which will help with the meniscus problem.
Posted 10/24/2012 3:27 PM (GMT 0)
Kazbern made some great points!!

I didn't even THINK about swimming and I LOVE to swim! It's actually one of the few things I can do that doesn't cause pain! And it's great physical therapy in general!

I hope more people respond to this. It's amazing and incredible to see a group of people come together on a forum to help each other out and give their own opinions and advice. Every little bit helps!!
Posted 10/24/2012 3:30 PM (GMT 0)
How long was she on pred and how long has she been off of it? Pred is notorious for causing weight gain.
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