Crohns - advice on best London hospital

[yaspri]

Hi, our 12-year old daughter was diagnosed with Crohns about 18 months ago. The medication has taken its toll. Would love to hear what other parents are doing, your experience in terms of treatments and London hospitals.

Hi I don’t have any experience with London hospitals but my daughter was diagnosed with crohns over 7 years ago age 12.
She is 19 now and doing great.

Thanks.May I ask if she is on any medication or how you manage it?

Morning,
She went straight onto steroids on diagnosis which really calmed the gut down. Then she was put on Azathioprine but had an awful reaction to it so that was stopped straight away. She then went onto Humira injections which put her into remission and has been now for 7 years.
She is still on Humira which are fortnightly injections she does herself.

What medication has your daughter been on that has taken its toll? Happy to chat if it helps. X

I don't have experience of London hospitals, but my son was diagnosed with crohns when he was 8 [ now 23 ]. He went straight onto steroids as his inflammation was so bad and also azathioprine.
When he was around 14 he went onto infliximab infusions. For the past 2/3 years he has been on infliximab injections that he does himself every two weeks.

He has been doing really well now with no flare ups for a few years [ fingers crossed ], works full time and has a good life.

Good luck for your daughter x

Hi Lbet
Thanks for your feedback. We have Azathioprine and Infliximab. I believe that the Azathioprine is the problem, but doctors say it has to be given in conjunction to make sure that there is no adverse reaction to Infliximab. We haven't been offered Humira and I'm not familiar with the differences.

Hi Londonnight, can I ask if your son also takes Azathioprine in addition to Infliximab. We were told this is standard procedure in the UK. It would be great to have some info in order to question this. Thank you

DD couldn't tolerate her meds either. Never been offered injections. Currently under UCLH

I've read St Marks in Acton is The place to go for bowel specialists. I haven't been myself, not sure if they cover children too. Have a look.

I second St Mark’s. I’m not there myself but have been recommended it several times by others.

I also had infliximab when I was on azathioprine. I now take adalimumab (not the Humira brand but same medication) alongside a reduced dose of azathioprine.

Can’t help re. London hospitals, as we live in Scotland.

My son was diagnosed with crohns when he was 9, he’s now 29. He was intially treated with steroids and was on the Modulen diet. He’s previously been on Azothioprine with no issues. He is currently having infliximab injections fortnightly and Usteinumab injections every 6 weeks. At present he is taking steroids due to a flare up, with mild symptoms.

What really helped was the brilliant clinical nurse specialists, who we could email or phone. Our son has a learning disability and refused to have injections, the IBD team arranged for him to see a clinical psychologist to help him cope, so he now injects himself. They also arranged information/fun days for children, young people and families. What we found incredibly helpful was how the team supported him and us to self manage his condition. Even though he has a learning disability he was able to give consent at the age of 13, to have an operation to remove a section of his small bowel. He could make this informed decision, due to the brilliant communication skills that the IBD team that treated him had.

We also receive support and information from Crohn’s & Colitis UK.

We refer to St Marks where I work. They are the bowel people for sure.

Thank you. St Marks in Acton is unfortunately only for teenagers who are 16+.

Thank you serene12, our best specialist nurse left shortly after our treatment started. The second nurse went on paternity leave and has yet to return and the new nurse is overwhelmed as working on her own. So, not so great support atm. I think a lot is about having some other people to talk to about this and I am also trying to find out if there is a group for teenagers with crohns in london.

how about Royal Free
i am sure i have heard they have a great paediatric gastroenterology service

Some people find taking Aza at night best to reduce side effects

inflix can be taken on its own however the Aza prevents any antibodies so she can stay on inflix for longer

DD has Crohn’s, was on various drugs and permanent steroids until she moved to fortnightly injections which seem to be working brilliantly. She does still take azathioprine although no adverse effects for her luckily. I think when nothing else works injections or infusions are the way forward, however her consultant said this was only offered for those over 16, I don’t know if that’s the case across the country or just our hospital. It’s a horrible disease.

@yaspri He took azathiorpine alongside the infliximab initially until he went under adult care. The doctor then took him off the aza as he said boys especially have a higher chance of getting glandular fever on it [ no idea if this is true or not ]. He has been fine now for years on just the infliximab.

The Facebook group for parents of kids with IBD is really useful and great for feeling not alone. DS on infliximab and azathioprine - definitely standard to have azathioprine alongside infliximab to help prevent antibodies being formed. All of NHS services stretched so swapping to another hospital can just end up with different problems (I have two kids with Crohn’s at different children’s hospitals so sadly have quite a lot of experience)

This is where I was when I was diagnosed as a kid in the late 00s. The paediatric nurse I had there was outstanding, although unlikely she’s still there all these years on!

I do find this hard to believe because when I asked our consultant what my daughter will have instead of Azathioprine he said nothing she will be fine on just the Humira injections. Also after a few years of being on Azathioprine patients are taken off it.
What effects of the drug do you feel your child has?

I don’t think it’s hard to believe. I’ve been on Azathioprine for almost 20 years. They reduced the dose when I started the Adalimumab but said I would need to stay on it for the Adalimumab to be more effective.

Sorry I meant find that hard to believe.

Hi @Zebee, thanks for your advice. It seems the norm to take Aza with Infliximab for children and I can see that for most of kids this works. I am not sure it is working for our child. Waiting for the next test results now, but she doesn't seem to be any. better and her mood has been very low

St Mark’s The National Bowel Hospital, Harrow.