Decision to make! Please help!

[Fee]

Hey everyone!! Ok so, iv been on pred for a while now, not working! And besides being in pain, being sick, still losing weight,.... I feel disgusting! That stupid drug has really given me a tash! Also really bad sideburns! And don't get me started on my body hair! Ewwww! I get so pissedoff when people say 'oh u look fine' or 'u can hardly notice it' .... Give me a break, I do own a mirror! I look like a pet!! Aaaaaaaaaargggg!

Anyway, last visit to gastro was Wednesday, he had the results of my latest MRI, and confirmed that the inflammation is still strong. He is referring me to a surgeon so I can discuss the benefits and risks involved. He has suggested putting me on azathioprine in the meantime to give it a chance, and if it doesn't work after a few months then I won't have to wait long for surgery as il already have my foot in the door.

But he says its now my decision, I don't have to try aza if I don't want to. So, aza or surgery??
I'm sick of meds and to be honest the side effects of aza sound more hassle than they're worth. Also, it says when on aza to stay away from people with
colds, and defo keep away from anyone with chicken pox! I work full time with
the public!
My doc says surgery is inevitable, so do I just do it now or do I delay for a while and take aza!?? Both options scare me, but I just want to feel well!
I kinda wish he hadn't given me the choice cos it's so hard! I want someone tojust tell me what to do. My family think surgery.
Any info or opinions would be great, I have to phone my nurse in the next few days with an answer.
I'm sorry this is sooooo long! And really really sorry about my pred rant at the begining!
Thanks for listening
Xxxxxxxxxxx

 

[Terriernut]

Hello Fee and welcome, sorry you have to be here though! We all seem to have a love/hate relationship to pred. Over here in the UK its MOstache month and people grow mustaches for charity. And that's why I'm growing my 'tash and beard' I tell people! (just come off pred actually, just havent waxed yet!:eek2

As for Aza or surgery, well. I bet you dont want to hear this, but my guess is you will probably need both. If you have the surgery now and it puts you in remission, you will need to be KEPT in remission, and Aza is one way to do it. They can try Pentasa, but it is a very light drug, and frankly doesnt do much for alot of us. Or not for long enough anyway.

Where is your inflamation at?

 

[Fee]

Hey! Thanks for your reply. I kinda guessed I would haveto go on that or something after surgery but I figured it would be a lower dose. ????
My inflammation is at T.I about 30cm, mix of severe inflammation and a little scarring.
Xxxx

 

[Terriernut]

Fee, you can certainly try meds before surgery, by all means. But, things like 6MP and Aza can take quite awhile to work is the problem. If they try you on Humira or Remicade, they will work quickly. However, they may not work quickly enough for you. I dont know how bad your inflammation is. And pred works wonders quickly for alot of people. That its not working for you is a good indication that surgery may indeed be your best option at the present time, and then further medication to keep you under control after that.

What about your bloods? What indications are they giving? What about your CRP, etc??

 

[Rl_gardner]

Hi fee I have been on aza for 2 years now with no side effects I have been very lucky touch wood and only had occasional cold. Unfortunately it didn't work for me and I am having surgery a week tue but the medication didn't give me any probs so guess it could b worth a try

 

[DustyKat]

Hi Fee,

I agree with Misty...I don't know how well the Azathioprine is going to work if the Pred hasn't been able to bring things under control beforehand. Also bear in mind that it takes up to 3 months for Aza to become therapeutic.

Dusty.

 

[Carolyn P]

Hi Fee,

No I mean Hi Darling,

I can't deny I want you to have the surgery and the sooner the better, I see you disappearring before my eyes and can't bear to see you in pain. You try to hide it but Mum knows. I'm longing for you to be able to live a "normal" life again and to live it to the full. If there is anything good about this it is that when we are well we appreciate it so much. So many people take good health for granted.
By the way have i told you latley just how much i love you?

Carolyn P

or

Mum (to you!) xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx