update from Ireland

hi there.
Am in hospital AGAIN!
You know how much trouble I have been having, with all the docs etc and how I had been to London 5 times trying to sort my ugly health problems out.
I came in this time as an emergency cos the crohns and diarrea had gone ape. I couldnt control the runs.
I presented at A&E and when my crohns consultant was at the bed side at 8am and I was dosy as I did not get to a trolley for three and a half hours, I went to put specs and hearing aid in and he siad "dont bother" I think he was just rushing off, so I saw this fuzzy shape and I could hardly hear him and was half asleep. Great start!
When I was admitted he did a scope, found nothing and did a CT and found nothing and all the bloods were perfect, BUT when the biopsies from the scope were back it showed that the crohns was more active than a year ago. My GP and I felt vindicated.
I was supposed to come in anyway for an overall assessment as things had become cruel with the neuro etc aspects.
I was to see a rheumy who was to deal with the autoimmune side of things. I had met him first in a private clinic and then at the bedside the first time he was SO rude. He asked me what was my most prominent health feature and I couldnt answer as I was feeling so crape I was all fumbly, he barked again and I said sommot like I feel terribly weak and find difficulty eating and he annoucnced "well you are not exactly fading away". I was so shocked.
Anyway he said that they'd do a muscle biopsy as my muscles are visibly wasting and he went. I remembered one question so went to the door and asked him if I could ask the one question and he said hed come back in but before I asked he bent towards me and said "You do realise I am in the middle of a busy clinic" That would mean the outpatients clinic attached to this private hospital.
It didnt matter I was paying the same money and was in a bed!
I felt like a 'fit in'. I didnt ask to see him in the middle of his outpatient clinic.
I didnt even know he was in one.
when he came the next time I asked him if I could have a nurse present because I thought him rude the last time.
He went awol and lost it completely, finally saying "and when we do the muscle biopsy we will find the truth NOThINg wrong with you" and stormed out.
I collapsed into the arms of the nurse.
I left hospital in pyjamas and dressing gown plus wheelchair.
He left the country - to cool off.
I complained.
I came back after the weekend and I was really unwell and the gastro told me I was somatising and that I was too ill for crohns alone.
He asked me what I wanted him to do and I said "I donno i am not a doctor" he went out the door and I went out another - home!!!!
But I had to come back for I was SO ill I really could not manage.
My hands feet were on fire and the pain was so bad I was wrapped in ice, I was lashing in artificial tears and saliva and had a dry cough and sipping water all night. My feet were red/purple. I was told in London that I had sjogrens but the rheumy who walked out on me just s***ed.
I was so poorly that I didnt think that I'd be able to get from the kitchen to the bedroom and it was then I knew I would have to come back.
The gastro is now being nice. The stronger steroids are kicking in for the crohns but the firing up of my body and the feet and hands are not improving. I can have fan, ice on feet and hands and back of neck and it goes on for ever.
Prior to hospital the entocort steroids had been trebled and apart from doing nothing for the crohns I feel they masked the blood results for they are rarely always perfect when done by the gp.
This time in the gastro has asked Prof. of neurology to see me and I am delighted as I have seen him with his patients and he seems lovely.
Everyone loves him.
My gastro told me I had fallen out with everyone well, yes, I have cos they have treated me like a psych patient telling me things like 'you want PD' and using words like somatising etc.
He also said this time round that he always felt the problems were mostly stress related. BULL>
Has anyone here experienced this firing up?
Would the steroids mask the bloods?
Finally, in london they felt I had Disconnective tissue disorder(?) and that 20% of crohnies get it.
my gastro here said 'nonesense' Now London IS the centre of excellence in the British Isles, and I would be inclined to believe the Lupus Centre I attended there that anything here although we have fantastic docs - when you can find them and they are all in short supply.
Thats my update. Long, and the fan is on full blast.
I hope someone answers this, no one on the crohns site has, do they tink I am loopy?
I dont.
the nursing director met me after the debacle and she told me she thought I was fantastic! All the nurses are wonderful the doctors are gobcrapes!!! please excuse my language. Did you hear the joke - What is the difference between God and doctors? God doesnt think he is a doctor.
xxAnn

Hi Ann, well of course your loopy! LOL just kidding but I swear the doctors over here are just as bad somtimes. Plus when you are so sick it;s hard to deal with people being rude. I love how so many of them blow the problem off as stress. Your health care system is so different from ours so i have to keep that in mind when I read some of the stuff you say. You have gone thru so much for so long I wish they could come up with somthing that is truly gonna help ya.
keep us updated and don't worrry abot what people think sometimes the squeekey wheel gets the grease!
love
carol

(((((((Ann)))))) How do you untangle all that red tape???? *sigh* I'm exhausted just hearing about it. It sounds like neuro prof might be helpful and the gastro was kind to get involved this way. Hopefully the new doc will uncover something. You may find that you don't get replies unless you are supportive of some of the other members of the forum you are posting in. If you have some time read some of the other posts and reply to others who are having trouble. It is great to reach out and cheer others too. . . but it also gives you a lift. Blessings!