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Crohn's Disease Forum » Your Story » Introducing myself...


10-16-2012, 07:17 AM   #1
PhoenixBird
 
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Introducing myself...

Hi Everyone,

My name is Juliet from New Zealand and I was diagnosed with UC in December 2011.

I've been hospitalised 6 times since then with various bad reactions to the drugs. So far I've tried prednisone and had to go off it after I had an episode of atrial fribulation (AF) where my heart went 200bmp for 8 hrs and I needed cardiac paddles to bring me back. Yeah, thanks steroids! So since then I've tried and failed with further hospitalisations on Azathioprine, Cyclosporine and MP6. The next step is Methotrexate which I'm not willing to try just yet, so since my colitis isn't severe enough to have my colon removed, I'm getting the slightly experimental appendectomy done. I'm now on the waitlist for that, so I hope that might help things, or at least to keep the drugs away.

I'm on long term sick leave from work at the moment while I try and figure all this out. Anyway, just thought I'd join the community and say hi!

Thanks in advance for all your support!

Juliet
10-16-2012, 08:19 AM   #2
Angrybird
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Hello Juliet and welcome to the forum

Just to confirm did the docs ever mention any of the biologics to you like Remicade or Humira? Has any type of dietary changes been mentioned to you? What symptoms do you still get? What is the plan with regards to the appendectomy - what do the docs hope to do during this procedure exactly to help with your UC?

There is a lot of helpful info and support here so do have a good look around.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
10-16-2012, 09:23 PM   #3
David
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Hi Juliet and welcome! Thanks for joining

You're going to also try Leukocytapheresis right? That's exciting and I hope it works well for you.

Do you know when they're hoping to get you in for the appendectomy?
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10-16-2012, 10:44 PM   #4
PhoenixBird
 
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Hi Juliet and welcome! Thanks for joining

You're going to also try Leukocytapheresis right? That's exciting and I hope it works well for you.

Do you know when they're hoping to get you in for the appendectomy?
Yes, I'm getting a laproscopic appendectomy. I'm on the waiting list at a public hospital which is supposedly 3 months long, but it could be much more than that. Fingers crossed I don't have to wait for too long.

And thank you for your kind welcome, David!
10-16-2012, 10:45 PM   #5
Trev
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hi Kiwibird, welcome to the forum.
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A best friend is like a four leaf clover

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10-16-2012, 10:48 PM   #6
PhoenixBird
 
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Hello Juliet and welcome to the forum

Just to confirm did the docs ever mention any of the biologics to you like Remicade or Humira? Has any type of dietary changes been mentioned to you? What symptoms do you still get? What is the plan with regards to the appendectomy - what do the docs hope to do during this procedure exactly to help with your UC?

There is a lot of helpful info and support here so do have a good look around.

AB
xx
Yes, Remicade's been discussed with me but I'm not keen for it for a variety of reasons, mostly because I am so severely ill from my other medications. I am still in a moderate flare, running to the loo 5-7 times a day, unable to work etc...

I'm on the waiting list which is apparently 3 months long for an appendectomy. My dr has seen an 80% improvement for patients with moderate to severe colitis having an appendectomy and results within 3 months, so I sure hope it could help me. After that, it's Remicade or surgery and I don't want either.
10-16-2012, 10:49 PM   #7
PhoenixBird
 
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hi Kiwibird, welcome to the forum.
Hi Trev! Thanks for the welcome!
10-16-2012, 10:51 PM   #8
Trev
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this is a great forum, lots of in and supportive and understanding people.
10-16-2012, 10:55 PM   #9
PhoenixBird
 
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this is a great forum, lots of in and supportive and understanding people.
Definitely! I'm really happy I've stumbled across this! Nice to see quite a few kiwi's on here too!
10-16-2012, 10:59 PM   #10
Trev
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we could do with more Kiwis on the last one wins forum if you have a good sense of humour.
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