This Is My Story..

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Feb 1, 2012
Messages
4
My name's Briana & I got diagnosed with Crohn's Disease about a little over 6 months ago now. I first started getting sick back in April of 2011. I was going to the bathroom constantly & had blood in my stools. It was a lot of blood, too; like the whole toilet was full of it. I didn't know what was wrong with me.. I just thought it was normal. Finally, I told my mom one day. Then I showed her how much it was and she completely freaked out. I went to my doctor & at first, they thought it was a parasite in my tummy. But they sent me to a specialist in Montgomery, Alabama and gave me a colonoscophy. My specialist diagnosed me with severe ulcerative colitis. Then the biopsies tests came back in & I was then diagnosed with Crohn's on June 6th, 2011; my 14th birthday. I've been struggling with it ever since. When they put me on Prednisone, I gained about 30 pounds. None of my clothes fit me anymore and it just put me into this huge depression. I didn't feel like myself anymore.. I felt tired all the time. Everytime I'd do something, I'd have to go lay down for a minute. I have constant pain every single day. But some days are better than others. Sometimes, it hurts so horrible that I just break down in tears. To make things worse, my hair started falling out. I used to have really thick hair & now it's pretty thin. It just falls out all the time; washing it, brushing it, and just when I do nothing to it. Sometimes, I'm okay like emotionally. But I've been depressed for a long time.. I'm normally a really happy person. But I just feel terrible. I've lost 12 pounds the last time I checked when I got weighed at my doctor. Because I can finally work out a little & I've been trying to eat less. I know I hate this disease & definitely dealing with it at 14 years old. But I'm SO much better than I used to be. I haven't bled in a long time & I can do more than I used to. I just don't really know what foods I'm supposed to eat & what not to eat. That's the hardest part. I hurt every time I eat something. I've been trying to find out what hurts me & what doesn't but it's taking a while. I used to go to public school before I got sick. But I'm homeschooled now so I wouldn't have to deal with it at school. & so I wouldn't have an accident. I'm getting better. & I've started praying that God will help heal me. Maybe this was a good thing I got this.. So I could find God. :) But now, I have to ride about two hours to Montgomery every 8-9 weeks to get an infusion through an I.V. with Remicade. Ever since I started taking it, I've been so much better. So I'm hoping & praying that I will get better & actually go back to feeling like a normal kid again. Because of this, I wanna be a specialist for kids with Crohn's. So I can help younger kids cope and deal with it.:)
 
You have tremendous courage and maturity and it sounds like you have the inner strength to get through this. Hang tough and feel better!
 
Try to be sure you eat and drink as healthy as possible. You will figure out what triggers your stomach as time passes, but be good to yourself and avoid fried foods, sugars, carbonated beverages. Those are not healthy for even healthy people and that can improve your health. Think of each improvement as a baby step toward good health and you will find a shimmer of light each day. Keep your spirits up! As my father in law says, each day you wake up is a good day! :)
 
That really helps a lot. I've been drinking a lot of water. My mom won't let me drink regular sodas anymore or fried foods. Those would hurt me a lot when I was eating & drinking them. & I take a lot of vitamins everyday. Thank you so much!:)
 
Ginger tea will help calm the stomach and reduce any nausea. Herbal teas are great as well. You can refrigerate them for a different taste. I found too much green tea will cause cramping and colon spasms, so be cautiuous with that, but keep experimenting! Glad your mother is on top of it!
 
You have a great attitude. I love that you want to help other kids. You will be a great mentor. Hope you continue to feel better.
 
Bri!

Hang in there girl! You will start to feel better soon. I have just been diagnosed too, and am starting to respond to my meds. I found that gluten (wheat) triggers my flare ups, as well as fried foods. I kept a food diary tracking what I ate every meal and how it made me feel. I now avoid anything that has gluten in it. Maybe give that a try??

Go to this link and look at the things that contain gluten, and try to avoid them. Maybe you will feel better?? Its worth a try!
http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html

Good luck, and hang in there!
 
Hello and welcome to the forum :) Also try to avoid nuts and foods with little pips and seeds as they will aggrivate the bowel. I have also found over the years with the meds etc that my hair has got very thin so I now have it cut a lot shorter than I used to to help it look thicker. I am glad you are starting to feel better on the remicade and I hope it continues to do a good job for you. Out of interest what vitamins are you on?
 
Back
Top