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.

Maybe it is just children they take off Azathioprine after so many years not sure. We do know of a few children who have not been kept on Azathioprine for too long.

My daughter has been having humira injections with no other medication for 7 years which put her in remission and she has never had any symptoms/flares since.

Gosh Gastroenterologist were great for us, was a different bowel condition that required illeostomy and tube feeds, plus some TPN. Would recommend. I think it depends if you click with the consultant a lot of the time

Cicra is a charity for children with IBD. They have lots of useful information on their website. They were a godsend when my daughter was diagnosed as you can ring them up and have a good chat with them.

Hey. My daughter is 7, she was diagnosed with ulcerative colitis when she was just turning 4.
We’re under Dr Kammermeier at Evelina and he’s amazing.
mesalazine has stopped working so had 14 weeks of Prednisolone (steroids) to calm inflammation down, my daughter now takes Azathioprine. It’s been a bit of a rocky road and she’s had some horrible side effects but slowly getting there. We’ve just found out she has liver disease on top - but we have an IBD nurse we can text at any time.
It’s a struggle finding the right meds and balance but hopefully you’ll get there. Sending love. Xx

OP, can you let me know exactly what your concerns are or what you seek in a treating consultant?

I have extensive bowel issues ( way beyond this with multiple illnesses so I don't want you to use my situation as a barometer). I can help regards treatment options and my experience.

I understand the primary reason for Azathioprine is to make the biologic medication ( infliximab) work for longer. These biologic medications can work well but they can lose their efficiency because the body learns to produce antibodies to that medication.

Aza is also a broader immune suppressing medication so it's an added ' maybe this too will help '. I don't believe you have to take it. I never did. But medication loses effectiveness with me very fast.

Have you considered Modulen diet temporarily. It's tough for a kid. It's like a milkshake formula you live on alone for a set period of time. I quite like the taste personally. It has to be prescribed.

Adumilumab ( another brand of Humira) is seen to be one of the most effective. This stopped working for me after a year but I know people happily on it for years. This drug is another biologic medication like infliximab.

Mezalazine is a medication that's nowhere near as high level as the biologic ones but some person also take that. I use this in suppository form.

I'm not in the UK so cant help with hospitals, but do have a child with Crohn's. EEN/Modulen is the first treatment here, and then straight to biologics. If yiu haven't tried EEN, that would be my suggestion. There is solid evidence it's as good as steroid treatment without then side effects. DS is in a massive flare and has been on EEN with his biologics which really has helped.
Infliximab and Humira are v v similar, I was told if one fails, the other is unlikely to work.

And i have no idea about Azathioprine, DS has never had it.

Wishyouwerehere50
thank you for your feedback. Yes, have tried Modulen which didn't really work and I understand that Aza is there to make sure Infliximab is accepted by the body but I feel that the double whammy immune supressants are really not good for my child, having colds, many side effects and very low mood as a consequence.

Thanks. Very helpful to hear.