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Posts: 3
Joined: Feb 21, 2012

Daughter with Crohn's

Posted by @sgsheets, Feb 21, 2012

My daughter was just diagnosed with Crohn’s last month, she is only 12. The Dr wanted to put her on Remicade but I was not comfortable going straight to such a “big gun” with out trying other meds first. We have settled on Apriso. Has anyone had experience with this drug? We are also looking for Crohn’s cookbooks, any suggestions? I hate the thought of what her future holds. Any words of wisdom are appreciated.



Posts: 1
Joined: Apr 12, 2012
Posted by @colleenc, Apr 12, 2012

If you google search, ” free cookbooks For Crohns” several will come up.


Posts: 3
Joined: Jul 27, 2012
Posted by @eldir2006, Jul 27, 2012

You didn’t mention how she was diagnosed, that would help.

I have lived with crohn’s for the past 28 years. When I was diagnosed, I did a lot of digging to learn about it, and to learn about the medications and their side effects. I found that the Crohn’s & Colitis foundation is a great resource. I would suggest you check that out. Your daughter can live a full life, and doesn’t have to hindered greatly by the crohn’s. You don’t know how the crohn’s will effect her in the future, and I assure you that the doctors can’t predict that, either. It may go into remission for long period. Take things one day at a time, be patient and she will learn how to recognize problems. It effects people differently.
My brother and I, were both the same age when we were diagnosed, we’ve both had 3 surgeries (almost identical). However, I also have a sister and a niece who were diagnosed with crohn’s, but their’s are mild, never had surgery. Her daughter was 14 or 15, I believe, when she was diagnosed. She is doing well and seems happy, but she has 2 uncles that have moderate to severe Crohn’s and I suppose she feels very lucky that she hasn’t had to have any surgery.
And as for the Crohn’s Cookbook, well, people have different tolerances. For instance, I can eat jalapeno peppers (in moderation, of course), but some people can’t. Some may be able to tolerate eating an orange or an apple, not me. It is kind trial and error. Generally, raw fruits and vegetables are out. high fiber is out, nuts of any kind, and try to avoid fried foods. Smaller, more frequent meals would alleviate big worries on types of food, too.


Posts: 4
Joined: Aug 24, 2012
Posted by @eddiesrp, Aug 24, 2012

I was giving Remicade(ulceratice coiltis) once and it helped for 1 week!!!! You did the right thing, in my case it was as a last resort . After that I had surgery to remove colon. I tried many diferent drugs before remicade. You did the right thing!
Dont give up to easy, you might find a drug combo that will put it in remmision.
In my case I went in remission for 10 years. Once it came back I could not get it under control. I made the mistake of stopping the drugs I was taking because I was doing so good! BIG MISTAKE…………

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