• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Introducing myself...

PhoenixBird

PhoenixBird

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 :)
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
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
 
David

David

Co-Founder
Location
Naples, Florida
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?
 
PhoenixBird

PhoenixBird

David said:
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?
Click to expand...
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!
 
PhoenixBird

PhoenixBird

Angrybird said:
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
Click to expand...
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.
 
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