My Story

[lilbit]

I was diagnosed with Crohn's sometime between the ages of 9 and 11. I spent most of my adolesence on steroids and various other medications, one for sure not even approved by the FDA at the time. I struggled a whole lot until 1998 when Remicade hit the market for Crohn's. It was a miracle for me. I never took medicine again, until now. I spent years ignoring stomach cramps and occassional dirrhea. Dealing with it in my tween years was so traumatic I never wanted to deal with it again. Mind you, I'm not so sick that I cannot continue with my daily activities, I just decided one day it was time to visit a GI doc for a check up and lo and behold there was inflamation. Stomach cramps have been a part of my whole life, it just became normal to me. I'm going to start Remicade infusions this week and have been reading different posts about it, so I decided to join in on the discussions.

 

[David]

Greetings and welcome to the forum

Wow, diagnosed at such a young age, that must have been tough! That's crazy that you were given a drug not approved by the FDA. Was it in a clinical trial?

If you haven't found it yet, since you're going to be taking Remicade again soon, you may want to find your way over to our Remicade support forum.

See you around

 

[lilbit]

The medicine was Budesonide which I think is on the market in the US now. The steroids were destroying my growth and the Budesonide was supposed to have less side effects.

 

[RFarmer]

Welcome lilbit! Sad to hear you were diagnosed so young. That must have been terrible.

I understand the budesonide thing; I told one of my doctors that I was on budesonide for Crohn's, and she was really surprised. In fact, she didn't believe me, and had to search it online. When she was learning medicine, it was apparently not in use, and so it's relatively new. I guess it's even newer for use in Crohn's.

 

[Jer's Girl]

Welcome lilbit! Remicade is awesome! I hope it helps you. Welcome to the forum!

 

[ameslouise]

Hi Lilbit and welcome!

Have you been on Remi the whole time, or did you start and then stop and are about to start again?

I hope it does the trick! - Amy

 

[lilbit]

I haven't been on anything for 13 years. My new GI doc really looked at my funny when I told him that. I went to a GI doc a few years ago, had a colonoscopy and he told me it wasn't the crohn's bothering me it was IBS. I believed him and went on about my business med free for a few more years just thinking stomach cramps were IBS related. So anyway I moved to a new city, got a new GI doc and also got a whole other prognosis.