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My teenage daughter was newly diagnosed with Crohn's.  She had an appendectomy last year when her appendix burst. The surgeon found two abscesses and evidence of Crohn's.  Earlier this year she had another couple of abscesses forming. She was treated with antibiotics every 8 hours for 2 weeks at home via a PICC line.  She had a colonoscopy which showed inflammation, but the biopsies were negative for Crohns.  Mid year she was back in the hospital again with a pocket of fluid the size of a quarter.  CT scan showed inflammation indicative of Crohn's.  MRI showed 2 fistulas.  They did the blood test to diagnose Crohn's, and it came back positive.  

She is on Pentasa for now, and did well with this over the summer.  However, the excitement and anticipation of her first day of high school, coupled with being at a new school where she didn't know a single person pushed her into a flare.  She was actually fine for the first two days of school (and she loves it - also has several new friends), but she fell apart over the weekend.

I'm struggling with how to help her, and what to ask the school to provide to help her.  (Such as bathroom passes so she has unrestricted access, a few moments to rest in the "sick room" if she's feeling pain, etc.)

I'm also struggling in how to help her deal.  She says she wants to be treated just like a normal kid - no special treatment.  While I think that's admirable, and I understand her wanting that, the reality is there will be times and situations where that just isn't going to be possible - she will need to ask for help in some form of support.  I can't get her to even consider special diets.  She won't keep a food log - says she has too much on her plate to keep up with.  She doesn't want to find a support group or other teens with the same condition to talk with.

Any suggestions? 

 Reply posted for brittanycurrey.

This is the oldes ttrick in the book--cook up a fake identity and a fake health history to gull people into going to your Web site and buying the totally ineffective and unproven junk you are peddling. People now can go to the Web site you represent and see for themselves the farcical "diet" junk and other totally unproven and medically worthless junk you are peddling for personal profit as a rep for this company. If you are interested in helping people with IBD, you would be helping them find their way toward scientifically tested remedies, not this worthless snake oil.  You will be banned from this site soon enough, I assure you. So flail away while you can--and I hope your conscience keeps you up at night to think about the harm you are doing to people who are seriously ill and suffering.

 Reply posted for brittanycurrey.

"Brittany Currey" has been reported to the authorities of CCFA for abuse of this forum. She attempts to lure people into a private e-mail correspondence so she can hustle a variety of useless vitamin/mineral potions for which there is no evidence of even a slight positive impact on inflammatory bowel disease. In essence, she is a professional sales rep seeking to profit personally from people's pain and suffering. I find this unconscionable. Soon enough she will be banned from this forum and her posts deleted. In the interim, I thought it best to save people some time and money by alerting them to what she is up to.

 Reply posted for momofateen.

Momofateen- Hello , Im Brittany! I am a 19 year old who has had crohn's disease for the last 5 years. I went through 3 1/2 years of highschool with this and did remicade and methotrexate. During my highschool years, my diet wasn't my biggest concern, when my friends when out to eat, i would want to go knowing that my stomach would hate me afterward. I still struggle with that today, but as your daughter grows with her disease, she will begin to realize the power her diet has. At age 19 I took the step of cutting gluten out of my diet, not because my Dr. said to, but because as we live with this disease we begin to know what make our bodies flare. Like for me, anything spicy, greasy, or with a lot of sugar, i tend to avoid, not because a Dr. said too, but because thats how our bodies work. Being gluten free and watching what i eat has made a difference, but with crohns, patients tend to be malnourished, therefore i take my Greens and other supplements to keep my body functioning how it is supposed to, NATURALLY. If you'd like some information about the types of supplements or if your daughter has questions and need to talk to another 'teen' about her issues, my email is brittanycurrey@gmail.com I really hope that helped!

 Reply posted for momofateen.

Just want to wish you luck at the doctors appointment. Hope she is on the road to recovery soon.

 Reply posted for momofateen.

We had a meeting at my daughter's school to put a 504  in place. They have been great about the whole thing. We have a doctor  visit tomorrow. Our journey continues.

My daughter was dx 9 years ago.  I agree there is a learning curve, but it is doable. I understand her needs for not wanting special treatment.  I share it that too. At the beginning of each school year I touch base with the school nurse as a "reminder" to make certain all of Liz's new teachers are made aware of her condition. The only "special treatment" if you can call it that is restroom usage. She is never to be detained and the schools have been great about it. We met with a nutritionist to guide us through some changes, some were small, but they helped.  I hear what your daughter is saying not wanted to follow a "diet", but you can make changes on your own.  I highly recommend looking at sending her to Camp Oasis next summer.  If you need further info about it, you can search it above. Liz has met some of her best friends there.    Her regular school and cheer friends have no idea about her condition and it's my daughter's wish to keep it that way....

 Reply posted for momofateen.

My son was diagnosed exactly one year ago.  We immediately contacted the school to put a 504 in place.  This will hold the school to certain guidelines that both agree on.  In the 504 you should definitely state that your daughter will need to be allowed to use the bathroom when needed.  I know that my son would use the nurses bathroom for more privacy. I would also recommend that you email all of her teachers and explain the situation just as a back up.  Also state that the child will be afforded more time to turn in work. My son the day before a project was due lost the completed project on the schools computer and spent the whole night redoing a project that was basically already completed.  He is a very conscientious student so the nerves started and was in a flare a few days later.  Also see if they can give you an extra set of books for home..that way if she is unable to go to school, neither of you, will have to worry that she will fall behind.  You could then email the teachers or the school secretary and request the work for the day.

I also feel it is important to have them join a support group.  My son still will not join one but I have found a parent through my doctor and have spoken to her and know that it has helped me recently.  It is a long journey and I wish you all the best.  Our first year was a rough one, but I am optimistic that we have finally found the right treatment for my son.