Hi all,


Thought i would say hello... My name is Emma and im from Salisbury. I have had Crohns for 9 years now.. Been good and bad times etc etc... I have just come off of Infliximab  after 1 year due to having more and more reactions and the side effects were taking over my life!! And now only on Pentasa maintenace dose..... And gonna hope for awhile...



xx

Hi Emma, welcome ... i am new on here as well.  My name is Sam and my 10 yr old son Jordan has just been diagnosed with Crohns, this seems like a great board ... speak soon - sam x

Hey there!  I'm rather new here too.  Have you seen the Crohn's Foundation Of America web site?  It also has a place for teens and kids.  Here is the address, I'm sorry I couldn't get the link to work for you.   http://CCFA.com

http://www.crohnsproof.com

Hey Emma, I might be starting infliximab soon if they can't get the go ahead for Humira straight away. What was it like? I'm a little nervous

I have has sever Crohns for over 2yrs now and have flare upos every few mths..longest remission has been 3mths which stopped a week ago DAMN IT! Previously tried both azathioprine and methotraxate and couldn't tolerate either...so i'm onto tryiing the next lot of potions they have for me.

Have you been told about Humira yet? it's a slightly cleaner version of infliximab that uses all Human protein instead of both human & mouse so apparently the body doesn't reject it as much and it therefore has less side effects. Anyway let me know a little more about your infliximab sessions and what your crohns has been like if you have some time as I would like to know a little more.

Thanks

Holly

Was on Humira prior to my resection.  I liked the injection pens and their easy application.  

hi all , dont know about humira but want to welcome you to this wonderful site, im new here but have found it informative and keeps you up to date with new stuff so that you know what to ask when you see GI man. Just remember that you are not alone and to make good days special so the bad ones are not so grey hope you are keeping your chin up and good luck with whatever you do x  

Hi Holly...

I completely understand why you are nervous... Firstly i have to say the nurses when i was having it done were amazing and helped so so much....

I was really ill when i started it i had 3 narrowings all in the large bowel . I think my markers were just below 100...  It was either surgery or Infliximab.

Although i have now stopped it because i was having reactions.... I have to say it probably saved my life.. after the first 3 infusions my markers went to under 10.... and have remained there since..  

I think the NICE guidelines have just come out about it and how long patients should stay on it, but i haven't got round to reading them yet...

I wish you all the luck with it any question feel free to ask i will try to answer them from my own experiences.

Em x

Hi Emma

I am due to go into hospital for 5 days to start Infliximab and if unsuccessful, I will have to have surgery.  I've tried several other options and currently on prednisolone and 6 mercaptorpurine but having terrible side effects.  What sort of side effects did you get from the infliximab?  

Cheers
Lou

Hi Emma,welcome...

Hi Daviep7 , thank you..

Hi Lou....


Good luck with it..

Until my 5th infusion ithe only side effects i suffered was  that i was really tired that night... but i think that was from boredom!!! (i bought a I pod touch to help pass the time in the end).  Also i dont know if it was just my hospital but i would get there and then have to wait between 1 - 2 hours for the treatment to start as the infusion has to be made up...

The day after i normally felt a bit tired and drained... But i know some people go on a complete high and can't sleep..  

It was after the 5th infusion i was having side effects, that were more noticeble... But again you might not get them ... I basically had and still have lupus side effects from it..  Also my veins are quite poor now.. But that would have come from any treatment like it....

I would ask to take some anti hiestamine and paracetamol. As i found this helpful..

Again i wish you the best of luck...

Em x

Hello All
I am also new to the site.  I am 49 and have had severe fistulating Crohn's since I was 14ys old.  It is a bit depressing that there has been no real break through in treatments over this time.  I have worked in various places in the UK (currently in Cardiff but originally from Manchester) and have found the best care I have received is from clinicians who have a particular interest in the condition.  Not everyone does!
Best wishes
Gary

Hi Gary,welcome mate.

Hello, I'm a newbie too!  Not new to Crohns though. I've had this illness for the past 46 years and in that time I've had 5 resections, the last was 5 years ago so you will guess I was young when I was first diagnosed.
I've learnt to cope with ALL the Pooooo days and sickeeee days and the days when you've just had enough. How do I cope? I just do Crohns is part of my life and always will be. We all have different symptoms and meds but we all share and know what Crohns is about. Its difficult to relate to non crohns people in respect of how ill you feel (but you look ok they say) Oh yes some say! I have IBD so I know what your going through... I just look the other way and swear to myself.. NO-ONE knows what this illness is like until they actually suffer from it.
thats all for now.. there is so much more I could write, but another time ok?

Kath

Hi Kath
I agree with all you have said. Non sufferers can't really grasp how grim the condition can be. Crohns has plagued my life since I was 13-14ys old. I can deal with the pain but the constant need for the loo was completely demoralising - and wrecked the early part of my life.  I ended up having an ileostomy some year ago due to complications, but this now has its own set of problems, bags coming off etc!
Best wishes
Gary