Hmm...what to do?!

Having been messed around and discharged from hospital too early a couple of weeks ago as a result of not responding to the IV steroids, the gastro nurse called me last Friday. She told me I need to go back in hospital, on the week that my consultant is on the ward. She told me I'm going in a week tomorrow (Friday).

The problem is that in the meantime I am not on any medication apart from the Asacol, as nothing I've been given has worked effectively so far. The nurse said I could try taking the suppositories etc but that theres probably not any point as they've not worked so far. I'm not feeling too bad but my energy levels are very low and although I'm not having to go to the toilet too many times a day (usually 4/5 times but some days up to 8/9), the amount of blood I'm losing is worrying me. Quite often I am passing just blood and mucous, but other times like last night I am passing pure blood and it is literally dripping and turning the water red. I have been off work for the past 3 weeks but am due to go back Mon - Thurs next weeking working just 2 hours. Is it worth calling the gastro nurse again to see what she suggests to do, or just hang on until I go into hospital a week tomoro??

Because I havn't responded to any medication in the past year since I've been diagnosed. So they want me to go into hospital to have intra-venous steroids. They tried me on hydrocortisone in hospital a couple of weeks ago but it had no effect and they sent me home saying I needed a colonoscopy. Then like I said in my previous post she called me to say I needed to go back into hospital as I was discharged too early, and that they were going to cancel my colonoscopy.

You should contact the nurse to have them check your blood count since your energy level has dropped. You're probably going to need to take iron if you're anemic.

Do you mean they want to admit you next week? That's a weird way to practice medicine.
How did they know it had no effect if they didn't do a scope?

What if you say, no thanks?

Maybe you can't handle that fiber you are taking. I can't, it's too harsh.

Good grief. Hang in there.

My thoughts exactly.  If sigmoid shows a need for hospitalization - why are they waiting?  When I had my sigmoid and doc gave me the prednisone - my NP told me to start it as soon as possible - not to wait even two days - it got worse before I could get the prednisone - more bleeding, etc.  I know you are in the UK so possibly they do things differently.  I would probably be in emergency and asking for my doctor.

Sure hope you get the help you need - FAST!!  INSIST!! 

ElaineNY

Well the specialist nurse has been fantastic but when she called she said 'I know its a long time to wait but the consultant doesn't want you to be in the hospital until the week that he's doing the patient rounds, so he can keep an eye on you himself and make sure nothing goes wrong this time.' And I was like well..what am I supposed to do until then? And she said I can try taking different medications but there might not be much point, and that I can always call her if I need to in the meantime. So I dunno...but I'm very fed up!

Yer I know..the whole thing (from my first diagnosis) has been a complete mess up...I've been complaining of bleeding the whole of the past year but each time I went for my hospital appointments theyve said 'oh just try this medication', or 'try this for a bit longer' and none of it made any difference, it kind of felt like they were just fobbing me off with medication each time. Then I got the specialist nurse on board and things have at least started moving forward (although obviously there have been complications on the way!)

I am going to write a letter of complaint in once I'm out of hospital, cos its not right!