Im New Here

Hello, Well I'm Sarah as you have probably already guessed reading the rest of my profile.
I Have either Crohn's disease or Ulcerative Colitis. They are unable to diagnose me properly as i show symptoms for both. I first got diagnosed with Crohn's disease around 2001/2002 time, but since i have been under the care of Nottingham's Queen's Medical Centre they think its Ulcerative Colitis.
Since I moved to Lincoln in 2007 my illness hasn't settled down so I'm backwards and forwards to the hospital.
They were trying me on a new medication called Infliximab which is an infusion into a vein as the digestive system will destroy it if you take orally. When I had my 3rd dose about 15 mins through i got a 39.2 degree temperature so they had to stop it. Now I'm having to go back to the hospital to talk about my options whether they try the Infliximab again or whether we talk about other options. The Infliximab is a definate don't know as it costs £1,500 to make up, so i guess i will find out soon.

Welcome to the forum, Pen is right we are a bunch of crazy folks.. but probably the nicest around. We try to help people as much as we can even if it is to rant. So if you have any questions feel free to ask and if you need to vent go ahead and do that too. A lot of us have been in the same spot as you.

Welcome to the forum. As Pen mentioned look into Humira. Best of luck

Thanks for the welcome.
Today has to have been one of my really down days which is why i looked for a forum. Im so weak and i feel so empty inside. I seriously feel like i dont belong to the world any more. yes i know its like im letting it beat me ive never felt this bad before. Has anyone else ever felt that way?

Very good point Pen, sometimes I forget I don't have support because this forum is a total lifeline. Thanks Pen for stating it so beautifully.

Sarah just as Pen stated I don't have any support on the home front and I use this forum and go to therapy a couple times a month to stay stable. That is what I need, others need more and others need less. Anyway you get it though... you do need support

hi Sarah

yep, i would agree - we are a slightly insane bunch, but we're very nice, and we do lots of ((hugs)) when people need

yes, Crohns can bring our moods right down to floor level sometimes, its part of the whole picture, and is hard to cope with. but - there's always a but - it won't last. things change, new days dawn, and you learn to make the best of the good days/months, and try to get through the bad days as best you can. resting helps, when things are bad, and treating yourself with kindness - don't expect too much of yourself when you're feeling like that.

welcome to the forum, Sarah. oh, and.... ((((hugs))))

Thanks Again.
I'm going in today to talk about my options.
Last time they said surgery if Infliximab doesnt work but i guess ill find out today.
I'll keep you all updated. I Just really want to say thanks. I Haven't been here 24 hours and i feel so much happier already. xx

good luck with your appointment today - let us know how you get on.

the power of sharing, and in return receiving understanding & care, is amazing - and is why this forum works. i wish every single person who's been through the pain, misery & worry of Crohns & IBD could find their way here, or to somewhere similar - like you say Sarah, it makes such a difference.

keep your chin up... & don't forget to ask all the questions today that are worrying you - write them down before you go if necessary.

welcome hun

this website has been so helpful to me.. ihave had lots of support on here which i really needed as i dont have much support at home ( i think my parents are in denial or something lol)

alot of my questions have been answered from me being on here!
x

Yes do let us know what your doctor said. And ding is right, you should write down your concerns because you may forget.

Well they admitted me, saying they wanted to try the infliximab again but they didnt in the end. then it took me 2 days to get a transfer back to the hospital near my house. they may be changing my azathioprine for an injection methotrexate or sommat.. x

welcome i'm new too

Sorry i kept it short. I Came back was tired, angry and upset.
Well i went in on Monday the idea was they were going to watch me for 24 hours then retry the Infliximab, but in the end they didnt which i was really angry about because i was 3 hours away from home and there was no point being there, I Missed my mom so much and i couldnt see her as the car broke down and is still broken now. so i went 4 days without seeing her. i was supposed to have a transfer to the hospital 10 mins away from me to finish off my IV Hydrocortisone but they messed up and i ended waiting 24 hours longer for that transfer, longer not seeing my mom. When i finally got to the hospital near me nurses were whispering to themselves saying my mom wouldnt be coming to see me as we had an argument, they wouldnt listen when i told them that it wasnt true it made me really angry. Anyway because i didnt see my mom for 4 days i took it out on her in the end when she did finally get to see me and i feel really bad about it. Im just so angry that they took me some place i didnt need to go and i was so upset i literally didnt stop crying for 3 days straight and im so angry. so if they admit me again im not going to the hospital 3 hours away they can forget it. im gunna put my foot down cause they say they want to try something and they dont and it wastes my time and makes me worse!!!!!

sorry to hear that Sarah.

i'm not surprised you're upset, and frustrated. and your mum must have been as desperate to see you, as you were to see her.

did they explain why it was a non-event, i mean why they admitted you then didn't carry out the meds administering they promised?

& where does that leave you now regarding medicines?

Well they decided to try me on Humira but they cant get the funds for it, so they are going to retry the infliximab tomorrow. but they are being real pains about it because they want it done tomorrow the day the car is going to the garage. so i have to stay in for a night and im annoyed because its the hospital 3 hours away. they only want me to stay in so they can do an injection on thursday morning. once ive had it i can go. thats unfair on my mom she has to travel 3 hours on thursday and 3 hours back just to be in the hospital not even half an hour. its just really annoying. and no they didnt explain why they wasnt doing it and they havnt explained why they are going that way again. its just a right mess and i seriously dont understand them.
anyone as angry with the NHS as me?? me and my parents are talking about putting me into Bupa cause of all the problems im getting and it will probably be a better thing all round cause the nhs are seriously getting at me now.