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ivy6
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Date Joined Sep 2005
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   Posted 5/31/2009 3:28 PM (GMT -7)   
Good luck at the doctor's today. Will you tell us how it goes?
Co-Moderator Crohn's Forum.

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*Phoebe*
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Date Joined Sep 2005
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   Posted 5/31/2009 8:01 PM (GMT -7)   

Hi Ivy!

 

Yes, will definitely let you know how it goes.

 

I’m at work at the moment but will leave at 1:45 to get there at 2:15. Given I always have to wait for an hr+ I won’t be rushing!

 

I’m looking forward to finding out how long it will be in for etc….. And why one of the setons was removed.

 

Btw I didn’t end up getting a kitty…… but think I might get one this weekend (it’s a long weekend too so good timing!)


*Phoebe*
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Date Joined Sep 2005
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   Posted 6/1/2009 2:49 PM (GMT -7)   

Well the appointment went ok…….. After having to wait three hours in the waiting room due to an admin stuff-up (after an hour and a half I checked where I was in the queue and they’d misplaced my file!!!) – I saw the head of colorectal surgery who took a look at my drain. He ummed and ahhed and said there is ‘still disease there’ (by which I’m hoping he simply meant its still draining). He then went off and spoke to someone for a while, and I am hoping he was organising an apportionment with the IBD team at the hospital after I told him I was still waiting to hear from them.

 

I have another appointment next Thursday afternoon to have the drain removed. He said it should come out easily once they cut the stitches but sometimes it doesn’t in which case they’ll have to put me under a general. I certainly hope that isn’t the case!!

 

He believes I should be on some biologicals to help it heal up. The frustrating thing is I have been referred to the IBD team by my colorectal surgeon, and keep asking when I will get to see them, and everyone says ‘ill check up on that for you’ but nothing ever seems to happen. I feel like I’m banging my head on a brick wall and I’m petrified that the drain will come out and it will re-abscess without these meds.

 

I just hope they get an appointment for me to get these meds ASAP. I have had enough surgeries and abscesses now. I don’t think I can take much more if it were to get infected again!

 

I will chase them on thurs when I get the drain removed, but I wish I were on the meds now!! I guess I’m just pessimistic, with everything that’s happened since last November (abscess, abscess and more abscess)…..

 

 


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 6/1/2009 2:53 PM (GMT -7)   
OK. In the meantime, I think you should start keeping a CDAI diary. Do you know how to do one, Phoebe, or would you like us to tell you how?

I say this, because the government INSISTS that the patient's diary be submitted with the application for Infliximab / Adalimumab. If you do it now, the doctors can look at it and start on the paperwork to get you the meds you need *now*, instead of you having to wait weeks... months... until your appointment.

Please don't feel too impatient, or think that they are messing you around. You're actually getting access to biologicals a lot more quickly and easily than many patients, considering you haven't been on Imuran yet.

Ivy.
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FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 6/1/2009 3:02 PM (GMT -7)   
Hi Phoebe! Thanks for letting us know how your appointment went, and great advice Ivy!

What else did the doctor say about the "still disease there"? Did he clarify what that meant?? Did he confirm that you are to have the drain removed on Thursday? Seems like the drain may need to stay in longer -- but obviously I'm no doctor nor was I there with you.

My colo-rectal surgeon made the recommendation for Remicade to my GI doctor. So the both of them recommending it made the insurance approval process go at lightening speed. I got approved in 2 weeks and got my first infusion a week after that. So hopefully your surgeon can speed things along too!

Take care!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/1/2009 3:07 PM (GMT -7)   
Nah, it doesn't work like that here, f/c. It's very bureaucratic and impersonal and (in my experience) they insist that everything be done by snail mail and sent to *Hobart*, for pity's sake, and the whole approval process can take weeks...
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*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 6/1/2009 4:11 PM (GMT -7)   

Hi guys

 

I wish now that I’d asked him what he meant by there still being disease down there. When he came back from speaking to someone elsewhere (leaving the nurse and I to have awkward conversations while I was lying pantless with a sheet!), he said ‘I will see you next Thursday to have that drain removed’ and I asked him if he was confident it was ready to come out and he said ‘yes yes!’ – He said it is still raining a bit and he wants it to be ‘completely dry’ before it comes out. He seemed confident it was ready to come out. I expressed my concern that it would re-abscess and he said that is always the problem, and that is also the reason he wants me on these meds. He mentioned imuran and 6-MP so I am guessing these are the meds they will try me on first. Do you think I will need to keep a diary for these meds also?

 

I always feel like these appointments are so rushed – and after they say what they want to happen, I am always rushing in questions (‘will it hurt when it comes out, are you sure its ready) etc……

 

I am just anxious I guess to get these meds because I am so scared it will re-abscess without the help of the meds. Just from experience I guess. I can only hope for the best but this thing has been making my life so painful and difficult since November of last year – I just hope it leaves me alone for good.

 

Perhaps the disease he was referring to was my fissure – there is a fissure above the drain near my tail bone which is very red and inflamed at the moment.

 

I feel like I have all of these surgeons ‘rooting’ for me but then nothing ends up happening and it is frustrating. Hopefully next Thursday I will get some more concrete answers as to when I will see the team/get the meds.

 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/1/2009 4:14 PM (GMT -7)   
Phoebe, Imuran and 6mp are not biologics. They are immunosuppressants. I feel happier knowing you're going to be started on those first, and not Infliximab.

I think a diary is always helpful... but no, I don't think it will be mandatory for you to keep one if you're "just" going to be started on Imuran.
Co-Moderator Crohn's Forum.

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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/1/2009 4:15 PM (GMT -7)   
ps. did you get any help with pain management?
Co-Moderator Crohn's Forum.

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*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 6/1/2009 4:46 PM (GMT -7)   

At the moment the pain is actually quite tolerable. So I am happy about that. Since the surgery after-effects have settled down, it’s a lot more comfortable. I’m trying to avoid strong pain meds as much as I possibly can, so I didn’t ask for another script. It does scare me a bit the thought of becoming reliant on pain meds. So I am going to try and stick it out. However, I think I will ask for some more next Thursday after having the drain removed, just in case it does hurt.

 

I keep hearing different things from different people about what meds I will be put on – so it’s hard to know. I would just like to know for sure so I could research them etc!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/1/2009 4:54 PM (GMT -7)   
In that case, if they're all giving you different information, then I think it would be a good idea for you to start that diary. That way, if you do need one of the 'mabs, you might be able to access it more quickly. It would also give the doctors a better idea of what your average week is like.

Glad to know the pain is subsiding.

I.
Co-Moderator Crohn's Forum.

New meds thread


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 6/1/2009 6:52 PM (GMT -7)   

Hey guys good news! I just got a call from the IBD team and Dr Radford-Smith and I have an appointment to see them next Thursday morning, which is the same day I am having my drain removed! Yay! So now I can stop stressing about my treatments!

 

 I am first on his list for the day and apparently he only sees 3 patients every thurs morning. I’m excited! This man could really improve my health and help my surgeries to heal up nicely. So happy about that!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/1/2009 8:40 PM (GMT -7)   
Is that this coming Thursday, or Thursday week, Phoebe?

Good news! I'm happy for you.
Co-Moderator Crohn's Forum.

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*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 6/1/2009 8:43 PM (GMT -7)   

Thursday the 11th june J

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