Nothing works!

[timmewimme]

Diagnosed with crohn's disease september 2010. initally on prednislone and asacol after having a colonoscopy done by a fit female doctor. Started azathioprine october 2010 after no initial response to the steroids or asacol and in late october start having trouble vomiting.
Jan 2011 my annoying consultent of eleged speciality in treatment of ibd starts me on infliximab which worked like a dream but was to good to be true because i developed vasculitis and infliximab had to be stopped.
April 2011 had colonoscopy done by surgeon. Then waved goodbye to the surgeon.
Ever since then for unknown reasons the interst in my care has dropped off. I'm anemic and have had two blood transfussions in the last month. have been on humira for 7 weeks now started off showing hope but sliping away again.
I don't know if i'm being paranoid but it feels like i'm being ignored because somehow dispite all this i've never been admited to hospital which leaves people shocked whenever i tell them my fun story. Don't know if it's my age (i'm 18) that makes people not take me seriosley but i'm going out of my mind and seemingly no health proffesional cares.
I don't know if public sector cuts and nhs reforms are affecting my treatment aswell. Just have no idea whats going on or whats going to happen which is kind of scary aswell.

 

[beth]

The cuts are making things difficult, but the world isn't about to end.
Get your gastroenterologist to up the Humira to weekly as it makes a big difference - do you have an IBD nurse, can you have a contact number for urgent access to your medics. If not see your GP and get them to escalate.

Remember these people work for you, the taxpayer (or soon to be), ask questions, make consultants aware you are unhappy with the care you have received.

 

[timmewimme]

yeah ive got a ibd nurse and her bleep number. do you do your humira weekly? My specialist is doing me a referal to some regional specialist i think they want rid of me because i'm proving difficult. I avoid my gp practice at all costs.

 

[beth]

I was on weekly, now on every 10days.
Make sure the referral happens promptly, because Humira is very good and lots of us seem to need the weekly doses at least for a while to get properly into remission.
As for your GP, with a chronic condition like this you need someone good on your side, if your current GP or practice is crap find a new one. Insist on seeing the same doc each time so you build up a good/useful relationship.