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Newly Diagnosed

Hello all, I'm Nick, 17 years old, and I was diagnosed with Crohn's disease last thursday after a colonoscopy. I began having pains in mid-november, and lost around 25-30 pounds in november and december. After getting so bad with pains and fatigue I just laid around all day until I was able to see a GI doctor. Everything was pretty straightforward and I've been prescribed Prednisone at 40 mg every day. I start tapering next week with my first Remicade infusion, as well as methotrexate at 7.5 once per week.

If anyone could give me any advice on how to handle Crohn's as well as what to expect from the treatments, I'd be very grateful. I'm also hoping to be able to get back into proper shape after the weight loss, as I want to return to practicing parkour as soon as I can.
 

afidz

Super Moderator
Hello Nick, and welcome to the forum!
I don't know very much about Remicade or Methotrexate. I have been on prednisone though. How much are you tapering each week?
Everybody handles Crohn's differently, mostly because the disease affects us all differently. The best thing you can do for your self is LEARN. You are going to be your best advocate. The more you know and understand the better off you will be. This forum is a great resource for information or support.
 
The plan is to taper weekly from 40 to 30, then 20, 10, 5, and then stop completely, so five weeks, by which time I'll have gotten the first two infusions. I've been reading often on Crohn's, and I'm already setting up a diet and lifestyle change so I can get back in shape as quick as possible.
 
It sounds like you are on the right track. You will have to figure out which foods cause you the least trouble, and once the Remicade kicks in hopefully you'll be able to further expand your diet. Many people find lean protein to be easier to digest, and it has the added benefit of being protein dense.

Everyone's Crohns is a bit different. There is a forum for teens where you can get some information from kids your age who are going through similar experiences. Good luck and keep us posted.
-Lisa
 
My son is 16 and on Remicade and MTX(methotrexate) he is on 10mg of Remicade and 25mg of MTX by pill once a week. We are still having to tweak his Remicade schedule to get full benefit. The loading doses went great for him and he immediately saw results but he has a problem making the full length of time between infusion, we are fixing to tighten the schedule to five weeks.

I hope you see results quickly with the treatment. I think you'll find once your bowels start healing that eating right and exercise will help you get back to where you want to be. My son has had trouble gaining weight but I think that is partly due to him still having inflammation so there are some malabsorption issues.
 
Hey Nick,

I have had crohn's for 6 years, I know one very important thing to do is keep a food diary. I only keep a mental one now because my diet is very limited. Yeah, it's definitely good to be your own advocate, sometimes it's a bit hard to do so at first, but it's worth it to be heard. It can get tough managing school and the disease, if you have to miss alot and teachers give you problems, its really good to get a 504 plan for in high school. It's easy to do that sort of thing for college to, I get a letter written every semester about me having crohn's and if I have to miss class, professors aren't always so understanding, so i's a good idea to think about that. I have been on remicade for about 5 years, for me I usually get tired and feel a bit out of sorts, it takes about 7-10 days to kick in and that's really when your immune system is vulnerable more than just the normal low from the infusion, so steer clear of sick people lol!! I do wish you the best. :)
 
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