My life with crohns

[Beebopbee]

Hi my name's Bianca. i'm 21 years old and currently undertaking a degree in public relations and professional writing. All my life i've struggled with my bowel but it was only 5 years ago that i was officially diagnosed with Crohns Disease. At first i thought it was a blessing (that at least i could name the thing that was causing me pain day and night) but that optimism soon dwindled as i realized just how hard it is to live with such a life altering, restrictive disease, that has no cure. Now that i'm 22 this year, i'm finally starting to understand how important it is to look after myself and keep my Crohn's under control. I'm on Imuran, Pentasa, Prednisilone and hope to be on infleximab soon. I've had a bowel re-section which gave me one year of freedom from Crohns however it is now back but under control. Recently i've developed fissures in my anal cavity which is causing me a lot of pain when i go to the toilet - hence my hoping to go on infleximab soon. I've also just purchased a SCD book as i am interested in trying alternative methods and foods that may help to keep my crohns under control. Right now, i am trying not to let my disease define who i am. I know it's a part of me - a huge part of me - but it is not all that i am. And i think that's the best piece of advice i can give to all out there in the same boat as me. Yes we have the disease, Yes it does impact our lives and make us different from the rest, but there is so much more to all of us, and it is those things that we should focus on and let shine. :ghug:

 

[Dexky]

Welcome Bianca!! Glad you've joined us You have a great positive attitude!! I know that will go a long way to help you fight back! How long have you been on pred? I hope you are near the end of your taper.

 

[Beebopbee]

Thank you! Now that i am feeling better than i ever have with crohns, it's easy to be a bit more positive, but of course i do have my bad days as well. I've been on pred for 5 years - my body absolutely HATES coming off of it.. but i'm now down to 2mg a day and feeling great, which is definately a first for me. I think i've come to realize the trick (for me at least) is making sure i take pred every single day and cut it down in little increments I find this forum really inspiring, informative and well...nice (even though we're all here under not so nice circumstances). I've never really joined and stuck with a forum before - i guess i just want to feel like a normal 21 year old, but at the same time... i'm not a normal 21 year old...so i think i'm coming to realize that sharing my story and associating with other people who are as close to the condition as i am could really be a positive thing for me Sorry i'm blabbering now... hahaha,
so your son has crohns? how is he going with it?

 

[David]

Hi Bianca and welcome! I'm so glad you found your way here As you may know, Infleximab is also known as Remicade. As you may be going on it soon, be sure to check out our Remicade support forum.

I wish you nothing but the best See you around!

 

[xJillx]

Hi Bianca and welcome! You are absolutely right - our disease is not all that we are. However, on those bad days, it's sometimes hard to remember that. But we have to try!

I think Remicade would be a good next step for you. It should help with your fissures. Also, maybe you could finally get off pred! Do you have a tenative date when you will start your new treatment?