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Poor Lucy has been really unwell and we are in hospital for the last week. Her crohns is now active pretty much everywhere, her bum, large bowel and small bowel. She's had mre and upper and lower scopes in the last few days. She is currently on TPN moving to 8 weeks een after that. Also on...

Just a quick update, Lucy got second infusion 2 weeks ago and doing much better, very gradual but more energy and less bathroom still some blood but not every visit, appetite hugely improved and she has gained back almost 2 kgs, wants to go watch football tonight so great and managed cinema...

No steroids to bridge wouldn't give them - was actually really annoyed at the whole process - our GI was on holidays for the two weeks that all the crap around the infusion was going on so GI covering would not make any decisions and to be honest by the time she go the infusion she should have...

Great the scopes look clean, what a nightmare for you. Hope the infusion goes well today. xxx

And I spoke to soon........................... symptoms started to return about 2 weeks ago very gradually for a couple of days and then with a bang, so second dose brought forward to 5 weeks (exactly), slight improvement since but certainly slower than initial infusion we are at day six post...

Hi everybody just thought I'd come on an give an update on Lucy, due to her harbouring a virus she didn't actually get her infusion until the end of February, by which time she was really sick - I've never seen her as bad!. So four weeks today and the difference is remarkable - she is not 100%...

Hi everybody I have posted recently about Lucy and the struggles shes been having. Tried EEN at the end of last year with some improvement but not enough, so humira levels re done and scopes this week and the upshot is that we move to stelara next week/or the week after. This will off label...

Thanks all - we met the GI last Tuesday and as I suspected not overly happy with her. She had also lost more weight while on the EEN as I had suspected. He also felt there were minor changes in her bum (Lucy's initial presentation was severe perianal disease) so that is a red flag. Re did...

Hi everybody I know I havn't been on in a good while and I suppose like many when things are good, you forget that Crohns disease is in your life and you get lulled into a false sense of security and then the rug is pulled from underneath and all hell breaks loose with this insidious disease...

Hi Crohn'sinappa - welcome and sorry you had to find this site, but Im sure like most people on here you will find it a godsend (as I did after Lucy was diagnosed). Lucy's story is that she to is VEO - she was diagnosed when she was 2 (she is now 10) - the initial year post diagnosis was...

Hi there Lucy started with remicade when she was 4 had in total 4 infusions had allergic reactions on infusion 3 and 4 - she switched to humira at that point - she is still on it 6 years later and has never had a bad reaction.

Laura only seeing this now - how are you doung?

Wow congrats delighted for you and your pregnancy. Glad your lo is doing better fingers crossed it continues. Welcome back

Good news mlp hopefully insurance will move for you

This is not my first talk me down thread, but really worried about my 8 year old son Luke tonight. For those that don’t know me my 9 year old dd Lucy has crohns so hence the stressing out. About 4 years ago Luke had an episode of blood in his stool(v loose) cleared up within 24 hours, brought...

Hi just want to weigh in and lend my support - my daugther Lucy who is now 9 was disagnosed at two and has been on biologics for 6 years with great sucess. I know you are going through a very scary time with you lo and when they are flaring and small it is very difficult as all you want to do it...

It is fantastic - Lucy is using it for about 8 /9 months at this stage and she says it is so much better. Word of warning though in Ireland it only comes in the pre-filled syringe so when she was on the lower dose and we had to draw it up ourselves it was still the old stuff. Mad really when...

Good luck with the appointment farmwife and hope you get a solution that works for little farm girl. Hope she is doing ok otherwise

I would get a second opinion as it will give you some peace of mind and help you with your decision and you will know you have done your best to the get treatment plan for your child. I would absolutely echo what everybody else has said about biologics - they are very scary drugs on paper and...

No Mari - we didn't do any that I can remember specifically - lots of bloods and tests etc. done at the time but it is all a bit of a blur!! Hope your little man is doing better and big hugs