anyone who's read previous posts will be getting the picture - got diagnosed in 1996 (emergency resection), 2 admissions for obstructions (adhesion related) and recent emergency surgery (resection). Other than in the very first few years I have not had any treatment or been under a gastroenterologist. Now I'm in the 'system' and feel overwhelmed as to who does what and who decides what's best for me and on what basis.
I think what's happened is that 'they' have assumed that I know all about Crohn's because I've had it so long. Thing is - in my head I haven't had it and the admissions for obstructions were due to 'plumbing' problems. Anyway I would like to know from people how they manage their situation e.g. how often do you see the gastro consultant, do you have an IBD nurse, what stuff do you see your GP about and generally how much you are involved in it all. So far the hospital have a file that is about 6 inches thick on me and have sent letters to my GP, taken blood tests galore etc and I have had to ask what has been found or decided- it's the only situation I know where a customer doesn't get a copy of any correspondence!!
Apparently GPs aren't told a lot of stuff either or quickly by the hospital. If I have to go on any medication (not on any at the moment and would rather stay that way but saying Azathioprine) I think I would rather have a relationship with my GP than a distant one with the hospital. Even though there is a specialist IBD nurse who I can ring and leave a message for it's a different relationship and I guess they deal with a lot of acute stuff - I have felt really stupid so far ringing her up about twinge I had after surgery or been upset about being told I need to take remission medication: I don't want to be seen as neurotic/hyperchondriac . Another question is who does what on other body stuff that may well be connected e.g. thyroid, possible blood sugar problems, period pains (adhesion?) or even virus-related diarrhea - normally I would go to the GP but I was told that I can ring IBD nurse; I don't want a situation where GP is hesitant to do anything without me talking to specialist about everything - the hospital system can't be that responsive.
l'd be interested in any advice on how to get the best out of the situation. In some ways it seems so much more straightforward in USA where they pay for what they get - I for one am so very grateful that we have a free healthcare system in the UK but I just wish I could have a more personalised treatment plan or feel that I can challenge it. The course of my Crohn's isn't tha same as everyone else's so why should I have a standard treatment plan just because that is easier for the healthcare system?
Any info/advice/comments welcome
Penny (in Yorkshire)