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Thanks Jen, I would like to give him 6 months on Humira with 6mp at lest then I will have tried all the drugs available in the uk. This might just be the one that starts to work for him. Waiting on MRI for small bowel, so will keep you all posted on our progress. Thank you all for your advice...

So glad it worked for your little one, must be such a relief. I am going to suggest he is put on adilibimab & methotrexate, also gonna make sure all the test have been run for other infections & also suggest an antibiotic, waiting on MRI should be in the next two weeks. He's just received IV...

I haven't had a 2nd opinion yet. One minute his bloods are fine the best he's felt on Infliximab. Then they do his yearly colonoscopy & endoscopy & we are taken in & given this news. I have had so much help & information from his sight, I will collate everything & make a list of questions...

This was our 1st visit to see surgeon & consultant. It was quite a shock & I have asked for a full report with the findings & also what their proposing as I knew I wouldn't be taking in as much as I needed. I did ask about a stoma to rest the colon & was told No. The inflammation would...

Will ask about that. We've been told all colon has to be removed as cells changing xx

Glad to hear your sons colon is healing, great news. We have been told J will need all removed except a small part of anus left so it will never be able to be reversed & he has to look on it as permenant :-(

Thanks Kathy, your situation sounds very similar to ours. Thing is because of his age & going through puberty they want to do surgery to give him the best chance of growing into a healthier young man. Another reason, is the length of time he has been on these drugs, they keep saying that...

He was diagnosed with Primary sclerosing cholangitis, if was found when they did an MRI to look at the small bowel he is now on Urso for this, there is no cure, only a liver transplant. At the moment tho it's his Crohns that is the problem. How old is your son? How long has he had Crohns? It...

At the moment he is on Infliximab infusion every 6wks (highest dose + mecaptopurine they are thinking of changing hi to adilibimab but consultant is swaying towards surgery, I'd like to try all options 1st. I'm being told that the risks are outweighing the benefits on the biologic

Thanks for that I have never heard of this drug Stelara (Ustekinumab don't think it is used in the UK but I will ask. Thank you A New drug that's just been licences hear is Entyvion(vedolizumab) I have asked about this drug as well. It is used for adults with moderately to severely active...

I have printed your link off to read. He has been on Modulin feed but they pulled the gastric tube at 6wks as he kept throwing up, couldn't keep the feed down even when pump was dispensing at its lowest. I did get a message from someone who's doctor agreed to try a flagyl/cipro antibiotic...

He has been on Infliximab for 1yr now the doctor can't decide if he has never responded or was a responder who has now lost response. This drug has masked what is really going on in his colon. All bloods are good except for iron, & infliximab levels high but his colon is a mess. The strangest...

Hi my son has been on Infliximab for over a year, he got an infusion every 8wks & his crohns was still playing up, they changed his infusions to every 6wks & his health seemed to improve. He went into hospital to have a colonoscopy & endoscopy. Unfortunately his colon is really bad & now they...