My friend's 14 year old daughter has just been dx w/ Crohn's, can anyone help?

kahne9 · 03-12-2006, 08:27 PM

I have Crohn's myself and have had 4 resections. But my friend's daughter has just been dx with crohn's. From what she's told me, it sounds like they've caught it in its very early stages. They just took her gallbladder and appendix out on Monday. Then they started running other tests, blood, upper GI, endoscopy, colonoscopy. They took 3 biopsies, 2 were negative for crohn's and the other was positive. The area it's in is where the stomach starts to empty into the duodenum, jejenum, etc. Does anyone have some comments on this? Anything would be appreciated

thank you,

brenda

electric6 · 03-22-2006, 12:57 PM

well if u have it, and they caught it, it sounds like u got it pretty much all under controll.

i myself have it and am a senior in high school. i just turned 18 2 weeks ago and started getting sick the the middle of my freshman yr when i was about 14... maybe 15. i ALWAYS thought i was having an appendicitis but my grandmother and her mother were both nurses and they kept telling me i wasnt.

i had drs that told me it was in my head. i had drs that because of my size (5'3" and about 95lbs) thougth i had an eating disorder and where asking me why i was doing all this just to make a cover for myself but the truth of the mater was i couldnever really eat anything. i cant have milk but i can have cheese and stuff. i cant really eat tomato sauces. spicy things. or any corn for that matter. food for a long time went thru me. the only test that found anything was the capsul endoscopy where u swallow the cammera pill. my crohns had gotten so bad that i havent been in school since mid sept cuz for the first month of school i had missed most of the days so i have a teacher that comes to my house so i can still graduate with me class. yesterday i have an MRI where they made me drink about 7 glasses of metamucel to look at my intestines.

a few months back, they put me on Pentasa. i was on 1,000 millagrams 4x/day but even 3x/day made me incredably unwell. they switched it to asacol and aside from teh occasional constipatipation from it, im doing relatively ok. i should vbe hopefully returning to school within the next few weeks.

i have had every test known to man pretty much so u can share with her that there is another teenager in the same boat and knows exactly how she feels. i hope all goes well.

~Stephanie

elmhar · 03-22-2006, 03:31 PM

Hi Brenda,

Dairy intolerance is quite common w/Crohn's Disease & sometimes gluten as well. Getting on top of the food intolerances doesn't always cure you but sometimes makes for less pain & deterioration.

Some but not all cases of Crohn's are linked to a mycobacterium from birds (not bird flu), which can be tested for (blood test) & treated w/anti-TB drugs. This is a somewhat contentious issue, medically speaking.

Best wishes.