hi again,
i've posted a couple of times on here, both those times before i had my endoscopy. when i woke up they gave me some results straight away, that my digestive system was inflamed - they also said they couldn't see any villi. they couldn't give any reasons to why no villi showed up but they said it could possibly be the inflamtion covering it up.
they told us to wait for the biopsy results - they said inflamtion [or whatever is causing the inflamtion] was deffinitely what was giving me the symptoms and they were almost certain its something treatable. this gave us great hope and i could finally breath a sigh of relief after suffering so long! they said it could be anything but they suggested an allergy but did tell us they wouldn't know until they got the biopsy results back.
they told us the results would be with us in 4 - 11 days. 2 weeks we rang as we hadn't had any results. they said the results were faxed through to my doctor over a week ago. so we rang the doctor [well, secretary], who said she'd have a word and someone would ring us back.
we didn't get anything in depth, just "a bit inflamed but all normal". and thats the only information we have
we phoned back the hospital and my consultant up there said the same - and that we should wait for a followup to discuss things - not sure how long a follow up will be, but it usually takes around 3 months which i really dont want to wait for! i'm now 17 and at a paediatric hospital so besides everything else, i'm also worried they're gonna kick me out anyway soon after the followup so will be stuck again.
they haven't said what was normal just that it was normal. [presuming the biopsy's].
i'd like to go in with a bit of know-how, as they do tend to fob you off, so i'd like to know a little bit of whats going on and what has happened. i was just wondering what biopsy's they would have taken? is there any basic general biopsy's and what they are for? also would like to know - for these biopsy's if i ask to see them - what's normal and what's not?
i really am clutching at straws here - but after 4+ years [i've had digestive symptoms and difficulties all my life but they've ruined my life the most over the last 4 years and been most severe] you do clutch at straws. there seems to be sooooooo much that can cause digestive system symptoms its untrue!
but i've come accross this illness; Eosinophilic Disease. I'm not saying I have it - I'm just clutching at straws. But would like it looking into and know about it a little bit. I get nausea, choking/inability to swallow, constipation, stomach cramps, acid reflux, blood and mucus when I go to the toilet, loss of apitite and feeling sick and full alot even when i have not eaten. i've lost alot of weight and really struggle to eat. these are all symptoms written, along with the fact that its shown inflamtion and also my doctor says i have signs of allergies. another thing is that i have been told on a few occasions i have a high white blood cell count.
it says this illness is diagnosed with an endoscopy - which i've had. it says high white blood cell count in the blood or digestive system.
is it usual/likely that they tested my white blood cells in my scope?
what's niggling me, because i can't seem to find it anywhere online is what is "normal" - do i have the right to have a look at my results myself so i can go through them? sometimes we have to nag and nag for results and then still just get told the word "normal" - many times, not even knowing what has been tested for and every time not knowing what is normal. and i know i'm just paranoid and wishing that theres been something they've missed so that i can get this stupid problem sorted out but sometimes i feel like they're just fobbing me off anyway.
i think thats everything. i know its a reaaaal long shot, but i just came accross it and could relate to alot of the things so thought theres no harm in asking on here
thanks guys!
x
