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James 16 and thought I would try talking, my story, my mindset about Crohn's.

Hi everyone, my name is James.

I am a 16 year old from New Zealand, not a very big country and not many people that I know or have heard of have Crohn's disease. So I was searching the net and stumbled across this forum.
Not to sure if anyone is interested but I'll give it a shot.
I was diagnosed with Crohn's disease almost two years ago when I was 15, but the symptoms were evident long before that. Ever since I was around 13 years old until not to long ago I had the pleasure of entertaining tiny mouth ulcers and inflamed puffy gums that made eating, drinking not the funnest thing to do. They had their ups and downs, but no one would have ever thought it would be Crohn's disease.
I was treated for gum disease and gingivitis and many other things including having my wisdom teeth removed for no reason as I was told there is a chance infection could be underneath. I was going from doctor to dentist to surgeon to specialist and back to the doctor again, no one had any answers or any clue what was going on. During those two years until my diagnosis I also had what was thought to be Hemorrhoids, which I was told was normal because various family members had suffered from them before. Closer to my diagnosis I also developed sore stomachs and constant diarrhea until the stage where I was on the bathroom all the time even if it was just liquid being excreted. All I wanted to do was lay down on the couch and sleep all day.
Finally one day when I was around 14, an oral surgeon I was seeing for over a year at the time said there was another specialist that was starting to work at his practice and I can't remember exactly what she was specialized in but she spent almost an hour with me and my mum (or mom if you're American), going through all symptoms I had other then the mouth and collating all the information I could give her. There were even things I didn't realize had happened like I dropped from 96kg's down to 89. I told her about the Hemorrhoids and everything I felt, when at the end of the appointment she said, "how do you feel about getting a colonoscopy" at first I was against the idea but my parents convinced me into getting it done. Well long story short I had severe ulceration and was almost 100% guaranteed Crohn's disease, and was referred to another specialist which I have been with ever since and I am pretty sure I'm in remission to this day, just like everyone else I have the odd sore stomach and tired day but I am not letting that effect me one little bit.
I'm 6 ft and 4 inches, way around 220 pounds and row for Auckland rowing club in New Zealand, I play rugby and go to the gym.
I know I am not that old but the best advice I can give to anyone is to not let it effect you as much as you can, don't let it stop you from doing the things you love, eat what you want when you want as long as you do regular exercise. I have never said no to a single food (just don't drink or smoke) just because I have Crohn's or let it stop me from doing anything my friends do. As soon as my rowing season finishes I am going to start getting more serious at the gym and try and get that 6 pack everyone wishes they had ;) .
You can sit and think about how you are going to live the rest of your life or you can make a difference and continue to do the things you love because at the end of the day you make your own decisions, not any specialist or any doctor or person who tells you that you can't do that or you wont be fit enough or energetic enough anymore. You yourself the person seeking answers and cures, the best cure you have at the moment is good health and looking after your body. Remember you are not alone, I have gained inspiration from many sufferers that have made complete transformations just like Bobby Parker, sorry couldn't paste a link to his story and diet.
If you have got this far, thank you for reading about me and feel free to leave comments. (p.s sorry if there are any mistakes or typos)
 

Catherine

Moderator
My daughter is not much old than you at 17 years. She is a competitive swimmer. She tries not to think about Crohn's but is very good at rembering her medications.

Doesn't drink or smoke.

The only food she has removed from her diet is milk due to lactose.
 
Hi Catherine

I'm glad to hear there are other teenagers out there in a similar situation, and only across the ditch as well :eek:zythunder:

Great to hear she swims as well, sport and the teamwork environment is an excellent way to take your mind of things and help stay in shape.
I too take my medication everyday along with the usual vitamins and minerals, especially iron which is one thing most Crohn's sufferers are deficient in.

Does she often have symptoms like stomach pains etc, or is she in complete remission.

good luck
 

Angrybird

Moderator
Location
Hertfordshire
Hello James and welcome to the forum :)

I am glad to hear that you are now doing well, out of interest what meds are you currently on for your crohn's? What vitamins are you taking and are these over the counter or ones prescribed by the doc - have you had your levels tested at all? How often to you get a sore tum and could you pinpoint it to a certain food aggravating it? If you would also like to chat with more others your age then do not hesitate to check out our teens only sub forum under our support section.

Wishing you all the best.

AB
xx
 

Catherine

Moderator
Hi james

Sarah not on remission, she developed a small bowel to small bowel fistula while appearing to be in clinical remission.

I don't think she has much pain now.

She currently do a course of pred.
 
Hello James. Thank you for sharing your story. I am so glad you are a very positive person.
Try to get in to the teens forum. May be you can be an inspiration to other kids that are having hard time.
 
Im in NZ too James, Pahiatua. I can relate to the problems you have had in your mouth me too - always thinking it was something else but swelling down both sides of my tongue (sore!!) was hard to explain. Ive lost back teeth as well as my wisdoms for no reason too! I get the wanting to lie on the coach and sleep all day thing - even some days now I still get that way - but Im old (57) so I can! I really love your advice and am thrilled to hear you are doing so well - keep on keeping on kiddo!! Jen
 
Welcome James
Thank you for sharing. I love the positive attitude. My younger some (James as well) is interested in Rugby they just started a league here but you have to be at least 13 to play. He turns 12 next month. So he is playing American football for now but will bring his rugby ball to practice and they have a lot of fun with it.
 
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