Crohn's Disease Forum » Your Story » Hey, another newbie

05-28-2006, 07:55 AM   #1
hey, another newbie

hiya all, im new here! just thought i would introduce myself. hmm where to start....well i was diagnosed with CD nearly 3 years ago, at 13 but knowing the syptoms now i can say i have had it as far back as i can remember. I never told anybody about feeling so bad until i was so ill and rushed into hospital where i had an emergency colonoscopy (even though the suite was closed) and diagnosed. I was put under the impression that i would go on meds and be fine, but it didnt work that way. I was put on pred n mezelazine (sp) but wasnt improving and reacted to mezelazine, then tried aza but got very ill as it dropped my white count really low, i then tried 6mp but i also reacted to that so was taken off it. at that point i had been in hossy for 10 weeks and not feeling any better, even through i was having top dose of pred n lots of anti-biotics. I then had to think carfully about a ileostomy or inflixamb, at the time the hospital had never used inflixamab on any children, so i was the 1st. It did help a lot, i can say it saved me from surgery. Then on the 6th dose i reacted to the inflixamab and it was no longer helping me. So i was then put on methotrexate tablets, once again not used on kids with CD in that hossy. The last 2 years i have gone from injections to tablets and back to injections, i find that it makes me really ill the next day and i pass out sometimes? any one found that? i really want to come off them but cant until they find something else for me to use, any idea's? Now the last 1 1/2 years i have had fistulas/abcess's/fusures. and have had 5 ops so far and am due more soon. they have mentioned a colostomey a few times to help heal the peri-anal area up, but i was told at my last appt that it would be perminante, so i have alot of thinking to do on it. they have just started anti-biotics long term to see if that helps prevent anymore (even though ive just developed 2 more in 3 months) Ive not come off pred since diagnosis, i have tried the other steriod, budesonide but once again reacted, but the steriods have left me with the start of osteoporosis. Still patiently waiting for 'remision' I've managed to get crohns in my mouth, gullet, stomach, small and large bowel, I use NG feed (elementry) every 2-3 months for 8 weeks at a time, currently on mtx, pred, pred supositries, omeprizole, rinitadine, pregaday, folic acid, cyclizine, modulen IBD, nestle nutrient drinks, multi-vitamins, calci-chews, and either codien phosphate or pethidine for pain. erm i also missed the last 2 years of school, but had home/hospital education and by some mirricle managed to get a B and 4 C's in my GCSE's last year. i think i've written enough now lol...oh and i was also diagnosed with ME last year to top things off lol. also i was wondering if anyone has found anything that has helped there joint pain and inflamation? i think you have a great site here so well done, and i look forward to getting to know you all. sorry for such along post! lol
katie aka bugzy xx
05-28-2006, 08:29 AM   #2
Senior Member
ladyB's Avatar
Join Date: May 2006
WOW!! What a lot to go through in the las 3 years.
I think you've taken more drugs than most
Hope you can find remission soon. Can't wait to hear more from you

05-28-2006, 08:33 AM   #3
Hi Katie

Welcome to the site!!! You've been through so much at a young age already!!! I look forward to speaking to you and seeing you around the site!!!

05-28-2006, 08:56 AM   #4
Ktie from Cardiff?If so how ya doing?Used to have many crazy chats and webcams with her and friends etc in the past.Blast from the past and i hope your doing better Katie.

05-28-2006, 09:00 AM   #5
mikeyarmo's Avatar
Join Date: Feb 2006
Location: Toronto, Ontario
Welcome to the forum. It is awful to hear that you had to spend so much time in the hospital, but it is great to hear that you were able to continue on with schooling. Hope to see you here a lot more in the future too!
05-28-2006, 09:45 AM   #6
Hye Katie,

Is your nickname Bugzy after Bugsy Malone or not?

I was just curious do I love my gangster movies
05-28-2006, 02:47 PM   #7
cheers guys
omg jonny, how you doing mate? i remember the chair races me, you and ry use to have lol aww i miss the old days hope everythings going good for ya!
danny: yeh its kind of after him, but a few other things its a long and embarressing story lol
katie xx
05-28-2006, 03:27 PM   #8
bugzy said:
danny: yeh its kind of after him, but a few other things its a long and embarressing story lol
katie xx
Sounds interesting, you haven't done time for a major crime then have you? I like the story of Charles 'Lucky' Luciano when it comes to ganster stuff but Bugsy was coolios aswell!
05-28-2006, 03:32 PM   #9
Hi Katie, welcome to the site! look forward to seeing you around!
05-28-2006, 04:15 PM   #10
Karen's Avatar
Join Date: Apr 2006
Location: Ohio

My Support Groups:

Katie ... I am sure that you will have a wonderful time here with us so see you around soon !!
05-29-2006, 05:24 AM   #11
05-29-2006, 08:23 AM   #12
Tami Lynn
Forum Angel
Tami Lynn's Avatar
Join Date: Apr 2006
Location: Ocala, Florida
Welcome Katie!

Hi... I'm Tami. Nice to meet you and thank you for sharing your story with us. It sounds like everything that could have gone wrong for you, did! I'm so sorry you've had to go through so much garbage at such a young age

If nothing else, your story helps us to know how much worse things could be and is an inspiration to know that we can make it through more than we realize we are capable of.

You seem to be very optimistic and must be a very strong young woman (I'm sure you've probably been told that before).

I look forward to getting to know you better via: the forum in the future!

Best wishes for health and happiness in the future!

"The only thing worse than being diagnosed with Crohn's disease 25 years ago, was when my daughter got diagnosed with this dreaded disease 4 years ago and having to stand by and watch her suffer with the same things I've dealt with for most of my life and feeling so utterly helpless to do anything about it!"
05-29-2006, 09:32 AM   #13
hi Katie
05-29-2006, 02:25 PM   #14
Hello Katie! Nice to meet you!!
05-30-2006, 12:11 AM   #15
Hey Katie

welcome to the site

all the best
05-30-2006, 01:14 PM   #16
Hi Katie, hope to get to know you!
06-03-2006, 10:24 AM   #17
Mama Crohnie
cookey's Avatar
Join Date: Apr 2006
Welcome to the group Bugzy. First off, may I say how much I love your name very dogs name is Mugsy, of course I named him after Bugsy Malone. Anyways, I am rambling ...Unfortunately I do not know of anything that rids sore or aching joints, that's all part of our Disease. My goodness I admire your strength, you have been through so much in the past 3 years. Keep your chin up honey, and always keep that great attitude. I am very happy you joined.
06-06-2006, 02:09 PM   #18
Hi Katie hope to see ya around

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