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Joined
May 17, 2010
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My name's actually Sean. I figure I'd benefit from being here, given the recent episode which has forced me to remember that I actually have this disease. I need to keep moving and I need to know what medications are next for me and be ready when the time comes that I fall out of remission.

I am 21 years old and I was diagnosed almost 10 years ago. I had it kind of easy, living in Ontario. I experienced a weird summer full of pain and sitting around quietly, feeling faint and weak. I never really pushed for help then; when the pain wasn't around I wasn't thinking about it. It also didn't occur to me to tell anyone about how my restroom trips were working out.

It's funny, I never got really sick, even though I was left untreated for months. When school came around I used the illness to try and get out of going to school. I remember my mom being mad that I was faking, and yelling at me that she would take me to the doctor. The doctor referred me to a pediatrician who pretty much just said, "I think it's Crohn's Disease." I remember thinking that it was my fault and that I could eat more vegetables and fix it, or something. But I didn't go home and life didn't just go back to normal. I had to go to the hospital.

To this day, I've never had surgery, though in recent months it seems like I've come close. The lining in one area of my intestine had been eaten away completely. All I could see in the picture was black carnage, and right by my appendix. Since taking Humira, though, I think it has healed over.

Anyone who thinks they know me might blame the Crohn's Disease for my personality and weird behaviour, but I'd say they were wrong. If Crohn's Disease has anything to do with who I am, whatever triggered it must have been with me from birth.

I can be nasty to people who are judgemental of others. I have a tendency to use inappropriate language (but won't here). But at my best, I think I can be appreciated. You'll understand, hopefully, my weird sense of humour when I use it in attempts to lighten things up.

-Sean
 
Hey Sean, welcome to the forum. I'm curious if you were ever officially dxed or if the pediatrician's word was final. Were you on any meds as a child? My son is 10 with a dx, I'm just curious about the big blank in your story from 11 to 21. You can pm me if you don't want to share your childhood on here and you can use all the inappropriate language you like, hell I might throw some back at ya :lol: :). Good luck and stick around, I like weird senses of humor.
 
Welcome to the forum Sean! I know York Region fairly well and since I have been there it has grown.

Glad that Humira has helped you , hopefully you can keep your symptoms at bay for a long period of time. I have a sarcastic sense of humour but I keep that out of the forum. Everyone is supportive here. Glad you kept trying and joined us.

:hang:
 
Hi Sean, and welcome!

Hope the Humira works for you and keeps things at bay. And i hope you can continue to avoid surgery!

We like a sense of humor around here! Especially if it's a poop joke!!

- Amy
 
Dexky:
I didn't want to make the post too long, haha. But here's more detail:

The tests I had in the hospital before I was discharged were 98% accurate with the diagnosis, I was told. I had an ultrasound, an x-ray with barium, and other stuff I don't remember.

I kept regular appointments with Dr. Griffiths, who is now head of gastroenterology at SickKids in Toronto. SickKids was not a place you wanted to be but it was a great place for a sick kid to be, I should tell you.

I only had one colonoscopy a few months after diagnosis and they didn't find anything really bad so I just kept on my merry way with regular blood tests. Whenever a medication seemed to be beginning to fail I was put back on prednisone along with a new drug, and then slowly taken off the prednisone. I haven't had clear skin since.

I took, all at different times, sulfasalazine, azathioprine, then methotrexate with folic acid. The methotrexate injections eventually caused me to vomit, and I'm not clear on why. I would have to hold my nose when entering the clinic, and vomitting became almost inevitable after an injection. I started taking it at home, which worked only for a while. I once had to hold back throwing up while writing an exam in grade 9.

So when I switched to Remicade at the end of that year, it was still in the trials, and I was paid for. I wasn't going to be taking methotrexate with Remicade because they knew I hated it, so they gave me a break. I had been on Remicade up until the end of last year, not without symptoms, but with almost none at all. In 2009, from perhaps halfway into the year 'til Boxing Day, it had been working less and less. I remember my new doctor showing mild concern, so he gave me a blood test to do but the appointment was made for 6 months later. I kept putting off the blood test and getting sicker, and the appointment was actually cancelled and pushed back to the 29th of December. I never made it to said appointment because I was taken to the hospital on the 26th of December. I had spent almost all of Christmas Day in bed, with a ridiculous fever and incredible difficulty sleeping. I threw up small amounts orange stuff that I think was mucous from my intestines. I had these uncomfortable half-dream half-hallucinations about odd things moving around inside me. I had an image of a movie reel spinning on a faulty axle, causing it to move back and forth as it spun inside me.

I was in worse condition last year and in the early months of this year than I'd ever been. They gave me a free double dose of Remicade all at once and my body destroyed it.

The months since have had me trying to get financial aid from Trillium (Ontario drug program) for Humira and EVENTUALLY succeeding, and getting my strength back. I can't run like I used to, and I lost my abs (lol) but I think I'll be there by the end of the year. I can lift heavy things again.

Jettalady and ameslouise: I hope so, too, thank you. I'm not too worried. Someone else could have been affected much worse by a diagnosis than I was; it hasn't had an impact on my success or my ability to do things. Only for a short period of time recently did I feel worried I'd be literally or financially disabled.

EDIT: I should also say, my dad and my brother are both over 6 feet tall. I got hit at the wroong time. I'm not much more than five and a half feet.
 
I hear ya on the financial part, I have full coverage and my metho was done in the ambulatory clinic so Ont health paid it. Made me sick all the time and wasnt worth it. Remicade is 4 grand a shot, but I was allergic, Humira was about 700 a shot but peter'd put on me. Not much left, except a 3rd possible surgery down the road and in the midst of getting a referral for a new Gi, my current one is retiring.

As for sick kids, it is THE hospital for kids. I had a ear op many many years ago, best place to be for a kid.

Best thing for now is be on a low residue diet, it does help.
 
Hello Sean and welcome to the Crohn's Forum!

It's great to have yet another Canadian here. :ysmile:
I know what it's like to get on Trillium, as I was self employed when diagnosed.
It's a fight to get on it and then a fight to get them to cover certain drugs.

Make yourself at home here...
You're among friends.

Nancy~
 
Welcome to the forum Sean! I can tell you have a great attitude about life and living with crohn's, which is good because you'll have the chance to inspire people here at times when they really need it. You'll find there is a lot of great information here and great people. Bring on the jokes... we love a good joke. I sometimes trend towards the self defecating humor :ylol:
 
Hi Sean and :welcome:

Glad you found us and I look forward to seeing you around.

All the best,
Dusty
 
Hi Sean
and welcome

You have a great positivity about you and that'll keep you going for years to come!
I have a warped wicked sense of humour and I think these lot have only just 'got' me!! ha ha
we love a joke on here, but just watch your effing and jeffing! we have some little uns on here too!
glad you found us, and we'll see you around
lotsa luv
Joan xxx
 

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