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I was diagnosed with Crohn's disease & AiHa when I was 19 years old in 2013. My health wasn't the best prior due to an ongoing eating disorder that I've had since I'm 14 but despite that I was in fairly good health other than my mental health. G.a.d - adhd
I spent 3 months in hospital being pumped with prednisone & blood transfusions. They tried every possible option before putting me on a biologic, it came down to money of course. That's all they care about, they could care less about a 19 year olds mental health being confined to a hospital bed, but I digress.
they started me on Remicade, it was fine and dandy until it started causing me extreme mental health issues, fatigue, acne, joint pain, etc. It's as if I went from passing blood in a hospital to just full on disabled mentally & physically. I always thought jeez this must be symptoms of crohns but no it's just the biologics.
i eventually built antibodies to Remicade where my last 5 doses nearly killed me but they kept on giving me anti rejection drugs for me to tolerate the infusion. Eventually I pleaded to my doctor to put me on humira.
humira was great for two years! Still the same old mental health side affects but I was less fatigued I rarely got sick until it was time for my injection. But the fatigue I would have for 7 days is what killed me. I also got infected wisdom teeth I was put on several antibiotics to fight infections which of course then built antibodies to humira.
so here we are now on biologic #3 stelara. It's been a nightmare from hell, constant upper respiratory infections, I've had phenomena twice, I'm on inhalers, antibiotics, I'm constantly hot as if I have the highest fever, but It's not reading that I have a fever. I'm absolutely drained 24.7 to the point where 60MG of Ritalin doesn't even do anything.
They put me on tramacet for pain because my neck & back are in so much pain. Biologics will kill me, I've said it before and I'll say it again. I will not live like this for the rest of my life. I would rather be dead, it's hard because my mother is also sick with a rare autoimmune disease and she doesn't have much time left.
no one realizes how sick I actually am because I appear to be fine, but it's just that I'm used to it now. But inside I'm screaming, I'm ready to jump off a cliff most days. I'm just waiting for the day my doctor says that I have cancer caused by biologics. At least then I know that I'd die faster... I know this is extreme but I'm 25 and when I get any amount of progress it seems to get flushed down the toilet next month.
it's really hard on the brain m, especially when doctors don't care anymore! I've been to the ER 62 times this year. I've sat in the ER pouring blood like it's no big deal. The last time I was in the public washroom 12 hours on the toilet on & off waiting for my name to be called. They just assume I'm some 25 year old junkie wanting pain medication. Yet I just want answers...
Reply posted for Tyleredwards94.
Hi . Scary isn't it . I've told my docs that my symptons are down to food allergy's but they won't test me for them . I've come off all meds becuase the pills they gave me first for UC were poisoning my liver so I found out becuase I had a random blood test so they moved me on to the amgevita injections witch I was on for 12 week (that is how long they take to shut your immune system down ) in the 12 weeks I had mouth ulsers so bad I could hardly eat , my legs came put in a reaction from the injections that hurt that much I could hardly walk then to top it off I ended up with a perianal absess as well that I igored becuase I was in that much pain everywere else I ended up being rushed into hospital with it and again I could hardly walk after having to have surgery for that this is while still battleing uc as well . Im off meds my bloods are back to normal and my stool inflammation was right back down in september when i did sample . Im not right still bit after stopping meds ive no blood in stool . Im not right as ive been suffering for 2 years trying to get it under control but im not taking meds that dont work and give me more problems and they did a blood test and found out the injections were not working either so not sure what actually made me a bit better but the side effects are worse than the origanal symptons . Hope you get sorted like I say if I could get my bowl momants to a routine I've cracked it pretty much my body clocks just all over with being in hospital amd off work so waking up in the night for toilet ect eating at different times ect . Hope you get sorted some how sorry if I rambled on :)