• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My Story

Hi guys,
My name is Sam and I'm 14... I was diagnosed with Crohn's three years ago after suffering from tummy aches since about age nine. I was originally put on prednisone and methotrexate, which worked for a while for me. Two years ago I came down with the Swine Flu shortly followed by Mono. I had to stop playing soccer and had just earlier quit dancing. Whenever I tried to do some kind of physical activity once I got back to school I had trouble breathing, so I was taken off of the methotrexate with fear that it was damaging my lungs. After many tests we realized that my lungs were fine, but I had already been switched to 6MP which I stayed on until just recently. About a month ago I went into my worst flare yet. For me, it's never been the diarrhea that has been a problem and I consider myself very lucky. Only a couple times since I was diagnosed have I had to literally run to the bathroom in order to make it (when I was in public). I have never vomited because of my Crohn's or lost mass amounts of weight. Once I recently started to get sick again, I went for a colonoscopy/endoscopy. My doctor said that if we had waited any longer I most likely would have had to undergo surgery. Instead, he put me on Remicade that I have unfortunately had reactions to during my second infusion, so we're not sure if we are going to try to continue or just try something else. I wanted to join this forum because I have been reading it since I went into this flare and some of the stories have made me cry and some have made me smile, and I thought it was important to have somewhere to turn when I had questions. To be honest, I know I could be suffering much worse than I am and I know that I am blessed. But sometimes the pain is unbearable. School is very hard. Very recently the disease has had more of an impact on me mentally than ever before, and sometimes I feel very alone. However, I have a great support system from two of the most important people in my life.
Also, just a side note... I hate prednisone. A whole lot. :thumleft:
 
Sammy,
You write very well for someone of 14. Kudos to your teachers.
Welcome. I am glad you feel able to put your thoughts and feelings down to share with others. I am much, much older than you, 44 and sometimes it is difficult for me to express my feelings.
Could you be suffering worse? Yes but that does not mean that you are not sometimes in pain. Someone some where on this site put it like this (I think): one guys breaks his foot. Another guy stubs his toe. This does not mean the guy who stubbed his toe isn't in pain and that his pain is any less important or legitimate than the other guy.
Sounds like you have a wonderful support system. Keep them close by talking to them about things. It will help them help you.
Good luck,
Michele
 
Hello Sam and Welcome! I'm sorry you are here with us, but there's no place like this when you happen to have an affair with Crohn's...like the rest of us. :)
 

Astra

Moderator
Hi Sam
and welcome

We have a lot of young uns on here for you, hope you find some comfort and support here.
Have you read the Remicade Club thread? Maybe you'll find some answers there.
lotsa luv
Joan xxx
 
I agree you are a very well spoken 14 year old, impressive. And glad to see you know your disease and meds and such as when I was diagnosed at 18 I was clueless, maybe denial but I probably could not have told you the real names of the meds or too much about what was wrong with me.
Just wanted to mention though, I used to be on Remicade (without reaction) but went off it so this time around I was advised to try Humira. It is a similar drug but human based with no mouse protein. Just a thought, not sure if it would apply to your situation but a lot of ppl seem to have tried it when Remicade isnt an option.
 
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