New here

I am 17 and a junior in high school. I have been teaching dance at a local studio for about five years and have been taking dance lessons since I was two. I was diagnosed with Crohns in 2002 at the age of twelve.

I remember the couple of weeks leading up to my diagnosis like I just experienced it. I was in the 6th grade so I should have been energetic, and full of life but all I wanted to do was sleep. I went to my family doctor the day my family was leaving for Disney World, a couple of days later my doctor called and said that I was so anemic that I would probably need a transfusion when I got back. I ended up not getting the transfusion but saw a gastr doc two days after getting home. We talked and once she learned that Crohns ran in my family she set up the typical tests and a week later I was told its crohns.

For two years I tried every single medicine that my doctor could think of. I ended up having a small bowel resection. the surgery helped for a little while. then it flared again. I started remicade and that helped for about eight months and then it flared again. So I started a strong round of medicines was choking down around 25 pills a day.After a few months nothing was working and I wasn't able to be in school. So I decided on a very drastic method.

Last summer I had a feeding tube placed in my stomach and went a pre-digested, liquid diet for two months. It worked miracles. I felt better instantly. Unfortunately a few weeks ago I learned that it is back so strong that my liquid diet wont be able to help because it is getting too bad too fast. I am now waiting on word to know if I will have another surgery.

This a long thread but Crohn's isn't exactly the easiest disease.

Welcome

Hello Avery and welcome to the forum!
No Crohn's is not an easy disease.
But, we do learn to adapt and live with it.
I do hope you get things back under control soon..
In the meantime, feel free to browse the forums
and learn as much as you can about treatments etc.

I'm pleased to see that you teach/taught dance...
I taught ballet years ago.

Again...welcome to the forum!
Hugs~Nancy

Hello, I am also new here. I'm not sure what to say except I wish you the best. You've clearly gone through some very rough times.

Hi Avery
First a big welcome to the forum.
Sorry to hear that your having such a bad time.
Crohn's is like a roller coaster ride (full of ups and downs)
I know CD is hard to take in all at once.
So many tests it seems like they are never ending.
Have to find a diet that suits you and then they have to find the right medication for you and something that your body will tolerate.
My Nephwie was just diagnoised with UC so he is find it rough too.
He had to get a blood transfusion too. I feel so bad for him because his life is just begining (at 22 yrs.)He's been aking me all kinds of questions.
Like what other test will I have to under go,What type of foods do I have to stop eating,what kind of medications are you on (meaning me) will I be on the same ones. So I had to explain to him that every body is different you and your body have to figure out what works best for you. As far as the meds go well thats for your GI to figure out what is best for you.

You mentioned about being tube fed. In Canada it is called TPN and I also was on that twice.The last time I gained 30 lbs.but was on it for 8 months. It was hard at first not being able to eat or drink any thing. I cheated a few times a bite here and a sip there every now and then.TPN worked great for me no more flare-ups for a while.and at the same time what it does is rest your bowels to get out of a flare-up.
Hang in there My fingers are crossed for you.
Keep us posted.
If you have any more questions feel free to ask.Some one here on the forum will answer.

Hi & Welcome! I too was pretty young when I started having problems, 15 but I didn't get a correct diagnosis til I was 30ish....

Hope to hear more from you!

:ybiggrin: :welcome:

Hi and welcome to the forum.


Ruth

avery, looks like you have been through a good majority of the experiences many crohnies deal with at a very early age. i admire your endurance and wish you the best of luck with your next roadblock.

Hey Avery,

Welcome to the forum - you've been through a helluva lot for someone so,young, but you seem to have a positive outlook - always helps!

Look forward to seeing you around kid.

Moz xx

Hi, Avery! I'm new here too. I'm also 17, but I'm a senior in high school.

I was diagnosed at the beginning of freshman year, which was kind of tough. People thought I had an eating disorder because I was so skinny, and I reall couldn't have much of a social life because I was so sick. I tried a bunch of the standard meds, and nothing helped until I found Remicade.

After I developed some freakish allergic reactions to Remicade, I had to stop taking it. I got pretty sick again, and a month ago, I started using an NG tube. I have to wait till after I graduate to get the tube put directly into my stomach, so I don't miss any school. It feels like forever.

Anyway, I really hope things get better for you soon. This disease sucks.