Fed up of waiting

[guest78]

Hi all
I'm feeling very fed up. Have been having a flare and feeling very poorly since September 2012. After a stay in hospital, months on pred and upping my humira dose my dr has said I need a ileostomy to rest the bowel. As I also have a perianal flare.
I was told this a month ago nd have had 3 MRIs and a colonoscopy but I still don't even have an appointment with a surgeon.
I don't know what to do or how long i have to wait.
I'm so fed up and tired of it all. It's been going on so long.
I am out of work and Uni and spend my days at home. The only way I am comfortable is when I'm in the bath.
My temps reach 39.9 at times and my heart rate never drops below 110. I feel awful most of the time.
Sorry to moan. I just don't know how long I can keep on putting on a brave fce and keep on going.

 

[Jennifer]

I'm sorry to hear that GEC. I'm assuming you've called all your doctors and are just getting the run around? Do you know what's holding everything up yet be it insurance or the surgeon trying to fit you into their schedule? I'm going to tag Jim (POPS) as I believe he had the same temp stoma and may have dealt with the waiting process as well but I'm not sure.

I hope you get the treatment you need soon and that the surgery goes well so you can start feeling like your normal self again real soon. Keep us posted.

Edit: Going to tag Afidz as well. She didn't have the same surgery but man did they ever keep her waiting.

 

[Jim (POPS)]

I'm so sorry you are going through all this. I can't be of much help for my temp. stoma was because a resection went bad 5 days after resection and they gave me a stoma because I went septic and thats all they could do. I have no crohns in my colon.

I sure hope evrything works out soon for you.

And Yes, I did like it when I had a ilyostomy for the most part. (changing the bag was not much fun but I could eat anhything I wanted.)
Jim (POPS)

 

[guest78]

Hey guys
Thanks so much for responding. I don't know what the hold up is, I'm on the NHS so insurance isn't an issue. I'm assuming its getting a slot in my surgeons schedual.
My consultant said she wanted me to be seen urgently and to ring the surgeon if I heard nothing. Which I did, but that was a week ago & still nothing. I'm not sure whether to just keep ringing or what to do.
Xxx

 

[Jennifer]

I'd keep calling. They can be busy and your message may have been lost or forgotten. Could you also try calling your consultant and see if they could help move things along?

 

[guest78]

Yeah I think you are right. Ill give them a call today & might email my consultant to see what she thinks.
It's just so tiring.
Xxxxx

 

[Jimena]

I am kind of same position as you are. I have been flaring since august 2011, perianal flare and rectum+sigmoid colon inflammed. Upping my humira dose, didn't work so now i am waiting to get a temp. stoma to get my bowels rest.

I feel like crap, fever at night, up to 38 and feeling dizzy and losing a LOT of blood when i go to BM. I just called my surgeon and said that if there is someone who cancel surgery, i would really want to go surgery as soon as possible. I am crazy and go to work normally, feeling poorly but try to manage. I work from home so that helps a bit.

I hope you get things moving and get appt. with surgeon. This is not nice way to spend your summer

:ghug: