hi
I am at the end of my tether today. (Pre warning im really quite nice and happy usually but i just need a little rant and also if anyone out there has crohns and BAD LUNGS! i need you!!!!!!!! this is a bit more lungy rant than crohns but all linked )
I suffer from all of the above. For the last 3 years i have had test test test, consultant after consultant, gastro sends me to lung specialist cos ive had pneumonia for the last 4 years every year - apparantly this is not normal but as you and i well know, crohns = vulnerable etc. so here i am just had some appalling treatment from a hospital for the lung stuff, started with one consultant, had a scan - he tells me you have pneumonia again, i laugh at him because i knew this in my head already. he said lets do some lung biopsies straight away and give your lung a wash. ok i said. he tells me he wont be doing it, but is passing me to another consultant who has broken her arm, so her registrar will do it - shes got flu, "its quite urgent so we have found a transplant surgeon to do it for us" ok fine, get there get some random dude never heard of does the operation. I had a very bad come round from sedation but im patient im okish. get sent home same day. 3 days later i was in A&E with horrendous breathing pain, was sent home, went back in an ambulance, they tell me oh just take some anti biotics but we cant find anything wrong with you. the antibiotics which happens to be a resuce pack i have at home for any chest infection i feel coming did work for the week, then a week later im back on another rescue pack of anti biotics - my crohns loves this - anyway 4 weeks after the biopsies i get a phone call - i need to discuss your results quite urgently, you have an infection and need this different type of anti biotics. i laugh down the phone and say "you did those 4 weeks ago, since then ive been A&E and had 2 lots of antibiotics." she was supposed to ring my GP and i was supposed to get and take these antibiotics which she didnt. Anyway my gastro ends up giving me some antibiotics based on this word i probably pronouced wrong that i heard on the phone convo so now im taking them and they could be the wrong ones! but i am past caring!
I have waited a year to see people about my lungs, the service has been shocking so far. The emergency appointment that was made for this lung docor was the 12th april and that was made 5 weeks ago!!! some emergency!!
Anyhows the be all is that the gastro and lung people want me to see an immune specialist now to figure out why i get so many infections in the lung etc. I feel this answer is a bit obvious!!
Has anyone else got bad lungs with their crohns and had to see an immune specialist?
My next thought is i am so sick of being up and down up and down now that I am contemplating going to America to be treated. Has anyone done this? How can i find out more about this? I am happy to pay or whatever. I just cannot continue life like this.
On top of all of this i am battling endometriosis pains which corhns HATES! ive been on steroids for the entiire 3 years, each week a new problem occurs. Its quicker if i tell you what does work properly than what doesnt.
I havent and feel like i cant go on holoiday for fear of being ill, trying to transport all the medication just seems like so much hassle and life is so crap and boring - all i do is rest so i feel a little bit ok for tomorrow. I know you guys are with me on that. I know im not alone. I know it could be worse. Im just in a very bad place today. Next time i speak i promise ill be cheery and helpful and kind.
Any help you can give on the america thing would be great. Im literally at the end of my tether.
And if there are any lung/crohns buddies, it would be nice to speak to ya.
My apologies for my rant
Cat xx