My Story So Far

[JessLouise]

Hi Everyone,
My name is Jess and this is my first time on a forum and pretty much sharing my story, so dont be too harsh! Ahaha
Im 15, an Aussie and I was just recently diagnosed with Crohn's Disease about 4 months ago and my life has completely changed...
Before my diagnoses I had been suffering with constant diarrhoea, excruciating stomach pains, ulcers in mouth for over a year. My mum would take me to the GP but they would do nothing about it. Early this year it was getting worse. We once again went to the GP and I got blood tests, after blood tests. We found out I was Anaemic but we still didn't know the bigger picture. By now my Mum couldn't wait any longer so she took me to the Emergency room. They admitted me straight away because I was losing lots of weight (I went from 44kg down to my lowest of 35kg). I spent 4 days in hospital and all we got out of it was an appointment in 3 weeks time to get a colonoscopy and endoscopy.
On the day I had them my doctor came back and told us I had Crohn's Disease. And I started Infleximab treatment 1 week later. Things were starting to look better!
I only had 2 treatments of Infleximab, then one night about 2 months ago I was going to bed when I started getting the most horrible pains I have ever had in my life! I was rushed into hospital. There was a perforation in my bowel (small hole) and there was free fluid. I was on a number of antibiotics, pain killers and God knows what... And I had to fast for 11 days, personal record! ahaha! After three weeks they said I could go home for a week then come back for an operation to remove the destroyed part of my bowel. I lasted 2 days at home before I was rushed back in. All up I spent over 5 weeks in hospital and today marks my first week of being home and it feels amazing!
Once everything has completely settled down from the op im going to start a different treatment for the Crohn's.
But right now my biggest struggle is diet. Im not allowed any red meat, high fibre foods, im lactose intolerant.. So if any one has any suggestions that would be awesome!!
Im sorry its sooo long! :/
I would love to hear from you!

-Jess xoxo

 

[Traumanurse]

Hi Jess. Sorry you've been going through all this. Must have been tough getting through school and being so sick for a lot of it.

I'm sorry you had a perforation, but at least now you've gotten rid of the bad parts, and maybe ready to move forward huh?

We are all definitely different when it comes to diet. A LOT of us are lactose intolerant though, so we have that in common. There's a special sub forum on here for diet I'd you want to read more. What I really found is pay attention to what you eat and what doesn't sit well. You can keep a diet diary to help with that.

Ya know, I just read another thread from a young girl (16 I think) just diagnosed. It would be cool if you guys could talk. Maybe look for a sub forum for that.

Anyway, wishing you the best. I bet a lot more people will jump in shortly.

 

[leahsmom]

Hi Jess,
Welcome to the forum. my heart goes out to you for all you have to go thru. You are really strong, I hope you keep getting better and I'm glad your on here to learn all you can. This is an awesome place for support. My 16 yr old daughter has crohns, I certainly wish she'd talk to you and the others but shes not comfortable with that yet. She had the food sensitivity tests done so she knows what she shouldn't eat....nuts, corn, wheat, to name a few
Fast food is a no no as well as processed food, especially Mac n cheese from a box kills her stomach.
Now she makes her own Mac n cheese, you kind of learn ways to be creative as you go along.
Glad you're here!!