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My story

Back in April 2013 I got quite ill, I felt like my stomach was going to drop off... I could hardly walk, I couldn't eat, I lost 5kg in 3 days...
My doctor gave me so many blood tests, ct scan, MRI and ultrasounds and the only thing that came back was my crp level at 105. I then waited on the urgent list to get in for investigative surgery for 8 months and finally got a diagnosis of Crohn's... In dec 2013
I was then referred urgently to another specialist via email by my gp only to find out they don't receive referrals via email, only by fax...
I am in need of answers, I have googled things, but it seems everyone's case is different, different meds, surgeries, etc...
I feel like everything I dreamed about is at a crossroad and am unsure of which way to go, as I don't know when I will need surgery etc...


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UnXmas

Banned
Hi,

So was it actually confirmed that you have Crohn's? Usually an endoscopy and a colonoscopy with biopsies are used to make the diagnosis and assess it's current severity.

Has any doctor discussed treatment with you?

Keep chasing up for an appointment with a specialist who can arrange any further tests needed and make a treatment plan. Although many people with Crohn's do need surgery at some point, it's not always so bad. I've had six surgeries and they, along with medications, have helped me greatly.

There aren't always concrete answers with disease. I found that accepting a degree of uncertainty helps me deal with being sick better than searching for answers.
 
I just haven't been given a management plan or told the severity as my gp referred me straight on to a specialist..


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UnXmas

Banned
Since the diagnosis is definite, the specialist should be able to start you on treatment (medication probably) as soon as you see him/her. It might be worth ringing the specialist's secretary and asking if your appointment can be brought forward. If your symptoms are getting worse, your GP might think it's worth asking the specialist for an earlier appointment.
 
Yay I'm seeing a specialist in 2 days...
I'm going private first, then public after the first consultation...


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Well I saw my specialist today, and it has made me feel all confused and frustrated again...
He wouldn't confirm the Crohn's, but didn't deny it... He is sending me for another MRI and more blood tests. He is testing for sacromilitis as well now and doing a MRI on my smaller bowel to confirm this...
Don't get me wrong, I am more than happy if I don't have crohns, but am just extremely frustrated that I am back to square 1 and not knowing...



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