G'day from another Newbie!

[AussieKate]

Hi everyone!

My name is Kate and I'm from Australia. I've had Crohn's for nearly 9 years now (am 27). My Crohn's affects my entire large bowel and half of my small bowel. I am taking Pred 25mg daily, 2g Mesalazine granules daily and 100 mg Imuran. I have tried Infliximab and Humira and both of them became ineffective for me. The reason I'm writing and have joined is I have noticed a few of you on the Vedolizumab trial. I am about to start this trial on Monday and am a little nervous but also excited about it. Anything to avoid having to have major sugery (not much would be left if they started taking out all the bad bits!) I'd be really interested to talk to those of you on the Vedo trial, I haven't had much luck contacting anyone in Australia on it and it'd be nice to talk to people who are, just for a bit of support!

Thanks for reading my post, look forward to getting to know you guys. Hope everyone is as well as can be.

Kate

 

[Nyx]

I know that Rob on here is from Australia and just started the same trial. Look him up...lately he's been posting in the Zone under 'game time'. I have no info on the trial itself, sorry...I went the major surgery route myself...lol

Good luck, and welcome to the forum

 

[Astra]

Hiya Kate
and welcome

glad you found us for some support and advice
yeah, aussie Rob will sort you out!
good luck
lotsa luv
Joan xxx

 

[Entchen]

Welcome!

 

[Rob]

G'day G'day

another fellow Aussie, cool

yup I'm currently on the vedo trial had two doses so far get my third on tuesday next week.
So far it's been pretty good, my bm hav basicly halved (down from almost 40 a day to an average of 15) so I'm pretty happy with that

my trial nurse told me not to expect too much from the trial until around ten weeks, but from what I've noticed it's seems pretty good, and if around the ten week mark I get the big noticable changes then I can't wait be nice have my life back

Iam or was facing an illostomy bag as my cd affects my entire large bowel colon an rectum, tho they couldn't be sure of my small bowel as they couldn't get too it to see it so who knows......

Where in oz are ya?
Feel free ask any questions etc an I'll do my best to help good luck and congrates for gettin onto the trial (it's not an easy trial to get onto)

an welcome too the forum

 

[Jennjenn]

Welcome

I hope the trial works for you.

 

[AussieKate]

Thanks for all the welcomes guys

Rob I'm so glad the vedo trial is working for you! I am hoping this is my answer too. I'm in Adelaide.. where abouts r u? Hope you continue to improve

Kate

 

[Rob]

Spooky lol
I'm in Adelaide too

so you having your trial at RAH?

Yea I'm hoping things improve too
if things go as well for you as with me then u will feel a bit more normal in a few weeks

 

[Rob]

Did they give you all the paperwork for the trial etc too read thru? Lots of info in there some sounds scary etc but remicade didn't sound much better when I read about it either
they just released a new statement/panflet other week on the drug which my trial nurse gave me

feel free to pm me with any questions etc
be good to speak someone else doin the trial -specially in my own home town

 

[AussieKate]

Haha what a coincidence! Yep, having the trial at the RAH, having my first lot on monday. The nurses there have been really nice, made me feel a lot more comfortable with the whole thing.
They did mention the new pamphlet when I was there on wednesday but must've forgotten to give it to me! Yeah it does all sound pretty scary, but from what I gather its a lot more advanced than Infliximab and Humira as it just targets inflammation in the bowel instead of the entire body. Have tried to pm you but it won't let me for some reason? How do i do it? (Sorry I'm not much of a computer person!)
Good luck with your next shot, are they keeping you on open label or putting you back into randomisation?
Either way, hope it keeps working its magic on you!

Kate

 

[Rob]

Ah cool
yea prob either lee Anne or julie

there really good there
I'll try pmin u

 

[AussieKate]

Yeah thats them, they're really lovely
Well, I have my first infusion tomorrow, wish me luck! And good luck for tuesday Rob!
Can't get personal messages, I don't know what I've done wrong. Won't let me do anything whats your email address?

 

[Rob]

Good luck for tomorrow Kate

I'm headed into town for a check up with my work dr o joy lol

perhaps ding or mike or benson etc can sort out your pm issue

I'm lookin forward to Tuesday for my third dose
hope it does the trick for you

are you staying on your other meds during the trial?

 

[Rob]

It may be because you only hav 4 posts?
Maybe once you've gotten a few extra posts it will allow you to pm etc

I tried pming you b4 but it said that you possibly had it set up to not recieve personal messages

 

[AussieKate]

yeah i'm not sure why i can't pm... maybe cos I'm new!

Yep I'm also on pred 25mg, salafalk granules (2 sachets/day) and Imuran 100mg day. SO over all these drugs, but something's gotta work hey?

Best of luck, hope you still get the active drug tomorrow!! Keep me posted on how you're going

 

[Rob]

Will do
yea be glad when it's just one drug too take etc lol

one thing I hav noticed after recieving the dose is that I'm pretty sleepy after (about 5-6 hours after) and I hav slept pretty much all the next day before
might just be me but I dunno
I'm not complaining tho as sleep is one area my crohns has affected and I hadn't been gettin much - it's gettin alot betta now tho

 

[Rob]

Hey found that Aussie site you mentioned
cheers

tried joining up but won't work
tried contacting them but my email returned

so I'll just stick with here it
thanks anyway