Hospital again

[clearwell]

I am so frustrated at the moment after another week in hospital.I suffer from diorrhea basically all the time with this damn crohns and have done for the last three years.I have at the longest been without it for a month maybe when on the steroids and then when I taper off to about 15 mg it all comes back.I went on pred in November 10 and stayed on them until Feb 11 when I was put on azathioprine and am now on 100mg at present.Everything kicked off big time black stools,diorrhea where I could'nt even keep water in and I developed the most agonizing pain in my lower back right side which was a new one on me.I phoned the hospital and explained I had had the diorrhea for 16 days the pain and I felt so ill so they said to go straight to the hospital.They did blood tests which showed I was dehydrated and they did a simple x ray which showed a mass of something on the right side where the infection is but they could'nt clearly see what it was .My doc said he could see I was ill so he phoned the hospital where I had my two ops and got me admitted for scans etc.Now what is really annoying me is I have begged for help and asked to see a crohns consultant who just deals with the desease,I have been told on numerous occasions there was'nt one.I have also asked if there was a specialist nurse I could ring when I can't control the flares was told there was'nt any,there are in fact two.Well I saw a crohns consultant who deals with just that who said(because I was on the observation ward) he wanted me on the gastric ward asap to do a scan etc etc.That never happened.They did stool tests which showed no infection and blood tests which showed a few things but in his words nothing to worry about although he did admit that you can't rely on the blood tests.He then said forget whats happened in the past we will start from scratch which meant I had a big dose of pred 80 mg in 8 hours and am now on 40mg and will taper.At the moment all my meds are about 22 daily with vitamins etc and also have now got food supplements.The diorrhea is down to approx 5/6 times per day.I have almost given up eating and I really don't want this to control me anymore I want to control it and have a life again.I did feel like I was getting somewhere but since I have found out the help is there and even though I begged for it and could'nt get it I have gone right back down again.They said this time we could discuss my options but it never happened again,just give you another pill.Now I can' t sleep maybe an hour max.Oh god I sound a right moaning bitch and I used to be so happy go lucky,lets hop it turns around again.Thanks reading and letting me get it off my chest.I am going to do some more research now.x

 

[Awbrey]

Clearwell
Happy you can vent :-( I hear you just go out of the hospital today and feel like crap with no answers I seriously hate this disease and everyone who dosen't care :-( Hang in there sorry now I feel like im venting,

 

[clearwell]

Hi Aubrey,you go for it I'll listen I hate moaning but sometimes you just have to. I have been up all night actually reading the complaints about the hospital where I was and believe me there are more complaints than compliments.

 

[Jer's Girl]

I'm here too! It is important to have people to vent to when life frankly sucks. I'm sorry you are going through this.

 

[ameslouise]

Hey Clearwell - Sorry things are so bad for you right now.

Where are you located? Are you in US or UK or somewhere else? I ask because there are different ways of navigating the health care systems. If you let us know where you are, someone on here will likely have advice on how to get help or an advocate or get some better treatment from your health care providers.

Have you spoken with your docs about any other treatment options?

Good luck - I hope things turn around for you.

- Amy