New crohnsy with questions

I'm a 13 year old girl and i was diagnosed when i was 12. I have a fairly normal story... was stressed,had diarrhia and cramps, wieght loss, anemic, etc. I am on 6mp, 12.5 mg 4 days a week and am on my third round of prednisone since my original diagnosis 9 months ago. My GI and parents are starting to talk about remicade and i have no idea what to think of that. I hear good things and would be ok with it, but then i hear bad things and really dont want to go on it. Is remicade good or bad??

one of the things i am scared about is that by starting remicade, i will start the long process of treatments that dont work. looking at forums i see lots of stories and see peoples signatures with a long list of meds that they started but then had to stop( and most have remicade) I am 13 and dont want to go through a lot of different treatments by the time i am 20, thats reasonable right?

Also, I NEED TO RELAX. i am always stressed and just have a lot of tension in my life. any tips on relaxing, because i know stress isn't going to help my crohnsn

Thanks for support or answers

Hi there and welcome to the community I'm sorry to hear of everything you've been through, that must be rough

If the 6mp isn't getting you into remission, then I think Remicade is probably a logical next step. It is a FANTASTIC medication for many people and I pray you would fall into that group.

The thing is, in my opinion, the treatment of Crohn's requires not just standard western medication but lifestyle and dietary changes and supplementation. Is that something you'd be interested in hearing more about as well?

All my best to you.

hi fishlove and welcome to the forum. I'm really sorry that you have been through so much.
I don't know much about Remicade I'm taking Imuran but I would like to tell you what I do to try and relax.

The one thing to do is NOT to worry about what is in the future for you. No one can tell you that. You could go into remission for many, many years. I find that if I live one day at a time I am alot more relaxed. I listen to alot of music. That really help me alot.

Keep your head up, that also helps me to stay positive and feel better. You will be just fine, belive that ALL the time, it will help you alot.

Jim (Pops)

Hi, first, although that's probably not a big relief at the moment, I can assure you, you will end up living a normal life with Crohn's. I was diagnosed with 18 and it took me a long while to figure things out, but I did - but today we know so much more about it, you'll figure out the dos and don'ts and how to control it much faster.

Back when I was diagnosed Remicade wasn't even an option (biologics were just experimental) and when I heard about it later on doctors were very reluctant about putting patients on it because of potential side things. That has changed recently, whether this is the right thing or not, I can't say. However, things like prednisone should not become the norm for treatment of your Crohn's. They are the worst way of treating Crohn's as cortisone has long term side effects and doesn't help in long term remission but just to treat short term flare ups.

In any event, medication, be it Aza/mp6 or biologics like humira/remicade, will never be the only thing that gets you sympthom free. Normally, it is a combination of a lot of things, from the right diet (generlly not too spicy, not too oily, no processed food, not too sweet, not too salty etc.), enough endurnce sport, enough liquids (water, not soda...) per day, and yeah, a bit of inner peace.

I don't know how severe your situation really is, but to be quite honest, in your shoes I'd try to get the Crohn under control without remicade first... Exept if you are really bad off right now, then it might be better to go for biologic drugs.

On relaxing, it took me years to be more relaxed and I doubt there is a "one way fits all" route. I have recommended long distance running and other endurance sport to anyonr who asked, because that really helped me and is probably the one major factor that keeps me in long term remission. If you are not doing any sport at the moment, you'll however will have to start slow, especially if your Crohn's is active. Half a year ago, I have started yoga and that is also quite relaxing. In any event, generally, whenever you get stressed out, try to go outside, fresh air and a walk helps. Also, although for a young teenager that might just sound boring, but a few hours long distance walking (potentially while listening to a good iPod collection...) beats watching TV any time...

Welcome to the forum! It's great that you are asking questions and looking for stress relief. Meditation and mindfulness are really great for stress and also have been shown to increase happiness! You can listen to some short guided meditation here http://marc.ucla.edu/body.cfm?id=22

Wishing you health and happiness!

Hi FL!

I am new to the forum as well. But your story reminds me of my own. I was diagnosed at 14, that was over 15 years ago! But i hid the symptoms from my mom for the longest. No one really noticed until they thought i had an eating disorder because i'd lost so much weight. By the time i got to the dr i was near death and didnt even kn ow it. But i say that to say, dont let fear stop you from taking care of yourself. It will only turn out worse in the long run.

Other than that, the nature of having a chronic illness is that its not "expected to go away" so u will find meds that stop working or don't work because everyones body is different and always changing. The bright side is tho, that there are always new medications and treatments being developed that will one day lead to a cure. When i consider the meds i started on and think of what i can take now, i can really see all the advances and i'm grateful that i have options that others didn't have. You'll survive this and you'll be fine.

If there's one thing that crohns does...its create some awesomely strong, compassionate, and humorous people. Good luck!

Oh and remicade worked really well for me until about a few years in when i developed low blood pressure and loss of effectiveness. I really want my doc to try and put me back on it now lol

Welcome to the forums and I'm sorry to hear you were diagnosed so young. However keep your spirits up! There are many great doctors out there any many different treatment paths to try. So you can figure out which works best for you over time. Plus they are coming out with new treatments and research over time. Know that you can and will live a pretty normal adolescence and adulthood. Just be sure to be proactive in treatment.