What Now?

[SillySam]

I was diagnosed two days ago with CD.
I have a seton in place for a fistuala since the end of november. The surgeon has reffered me to a GI but said 'don't hold your breath'.

When they fitted the seton ,the surgeon took cells and was able to determine whether I had CD or not. And I did. As I said, this was november, I waited 3months just to get the results of the biopsy (which he had told my GP was clear.) In August I had an abcess the size of a golf ball, and didn't get any follow up until I had already ended up in the a&e with an infected fistuala (nov).

So what now?? I've been told I have a chronic ilness and I could be waiting months and months just for a scan to see where's affected, then another few months to determine treatment? How long should I be waiting? Is there any positive action I can take to help myself?

What really gets my goat is I was seen in 2weeks for an abcess in my breast, but a serious illness and Im left at home with no information or plan.

 

[ameslouise]

Hi Sam, Sorry you are going thru all that! I don't know how things work over there with your health system, but that seems an awfully long time to wait for any kind of follow up and scan. Is there no way you can be elevated to "serious" to speed up your wait time? Maybe some others from your area have some input. I just wanted to pop in to say good luck!

- Amy

 

[littlemissh]

That is not right...see your GP who will get it expedited. Most GI's in the UK will see you within a month if you have active IBD...as long as they know. Referrals now go via a central referral office and so don't get seen by the consultant so they can't hurry up appointments. If your GP rings or writes you will get an urgent appointment.

 

[SillySam]

Thanks
Littlemissh- that's a great idea, I'm going to go to my gp and see what she can do. She wasn't pleased the last time they kept me waiting (when they said the results were clear)