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surgery vs. suffering?

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Ulcerative Colitis
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Posted Yesterday 10:57 AM (GMT 0)
killcolitis, disembowelment? Really? You are quite the dramatic one, aren't you. Guess I should change the letter I sent my clients letting them know about my upcoming surgery and subsequent hiatus of my business ... let them know I am getting disemboweled in six weeks. C'mon. I hope this isn't how you term things to your child. Maybe it's not really UC she has, maybe Mom is just scaring the crap out of her!!
Meesh
Posted Yesterday 3:36 PM (GMT 0)
Meesh, sorry no offence, but that's what it is. Perhaps it is a little too dramatic of a term, I don't know. It doesn't really bother me. My daughter is very young and we don't actually discuss the disease with her, just symptoms and treatments, and no I'm not scaring the crap out of her and unfortunately it is the disease. Thanks for that though... Burli, thanks for your opinion on the scd. It's helpful to hear what everyone has to say. I know I'm taking this thread way off topic so this will be my last post. My daughter has plenty of calories through the diet (honey, coconut, butter, full fat yogurt and cheese, meat, nut butters and flour etc). I know quite a few people now who have become drug free on the scd (including several children on dragonpack, the website for parents with children with IBD and several local children I've managed to track down). My daughter is currently on pentasa but was given predsione when diagnosed because her flare was really bad. I do buy the science in the book because all of the work on probiotics and gut flora imbalance (ie. recent articles in Nature etc) have supported this. I'm no scientist but I do believe there's something to it. Having said that, I'm not blindly following the diet. If it doesn't seem to be working in the future or if she experiences anything like what you did, she'll be off and I will find something else. I also think Wolfgang Lutz's work on low carb diets seems to be something to try but I'm a little hesitant to impose this on my daughter completely. It's been hard enough on her losing her favourite treats. I do think allergies to foods may play a part for some people, maybe many and we are exploring this as well. Like everyone on this list I'm doing what I can to heal my daughter. I'm convinced something will work. It's early enough for me to be hopeful, though I do consider and research surgery often because I also want to be realistic.
Posted Yesterday 5:02 PM (GMT 0)
When I say I don't buy the SCD science, I mean the way she present's it...as a cause of UC. I believe in probiotics and having proper gut flora too. The probiotics are really just flooding the colon with something that the immune system go after, I think it's similar to the whipworms creating something the immune system can go after.
As far as people going off meds because of SCD, a lot of UC folks have one flare and that's it. I'm not stating this to convince you to stop her diet (I know you wouldn't anyway). I would try it too; I did for myself.

It does seem to me that if the SCD science is correct, and you have your child on that strict diet, then why is it not working?
People say it doesn't work for everyone...I believe it could be there are foods that the diet restricts which may be intolerable to some not because you no longer feeding the bad bacteria.
Posted Yesterday 7:06 PM (GMT 0)
Burli,
She has been on the diet for a little more than two months now, so I can't say if it's working or not. In those two months, knock on wood, she has been well. Like you said, though, this could be the pentasa or the fact that her flare ended and she just happens to now be in remission. I don't know. I don't even know how or when I will be able to tell that it is working for sure. But, it's worth a try. Also, Elaine Gottshcal doesn't say that bad bacteria cause UC, she says she doesn't know what the causes of IBD are (and I believe there are different components, which is why such a diet wouldn't work for everyone) but the people who do have IBD have a bacterial imbalance and "bad" bacteria feed off of "bad carbs", further imbalancing the gut flora. At least, that's my understanding of it.
Posted Yesterday 7:06 PM (GMT 0)
Burli,
She has been on the diet for a little more than two months now, so I can't say if it's working or not. In those two months, knock on wood, she has been well. Like you said, though, this could be the pentasa or the fact that her flare ended and she just happens to now be in remission. I don't know. I don't even know how or when I will be able to tell that it is working for sure. But, it's worth a try. Also, Elaine Gottshcal doesn't say that bad bacteria cause UC, she says she doesn't know what the causes of IBD are (and I believe there are different components, which is why such a diet wouldn't work for everyone) but the people who do have IBD have a bacterial imbalance and "bad" bacteria feed off of "bad carbs", further imbalancing the gut flora. At least, that's my understanding of it.
Posted Yesterday 7:41 PM (GMT 0)
  A child suffering with UC would be heartbreaking. The thought of taking out the colon would also be hard, but I would also look at how resilient children are. They adapt to things much better then adults do. I would hope the removal could at least not involve an ostomy bag.

     If my symptoms ever became to the point that they interfered with my quality of life I would have the surgery. I have been there and done that with a temp ostomy and it was not bad at all.

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