B
bugzy
Guest
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
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
