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Hi all

Just thought I'd update you on J's progress. Last year he was newly diagnosed and failed on Remicade / Humira / EEN / Steroids. This led to 3 hospitalizations and the brink of surgical solutions. It was a scary time.

So, in January J started Stelara. He was in a bad way in hospital and I was very concerned at the length of time it could take to kick in. I had heard about multiple antibiotics having some efficacy and I asked the GI consultant to try it. J started on the Stelara on the Monday and the antibiotics on the Friday.

Within ten days of starting the antibiotics, J had gone from 20 bm's throughout the day to 1-2.

As part of maintenance, J is taking Vancomycin for 2 weeks of the month which we have now switched up to 4 weeks of the month. He had a hiccup 10 days ago but has bounced back pretty quickly. He has also continued with the Stelara.

I know the antibiotics don't work for everyone but there are some for whom it does, especially in pediatrics. There is also very little information around Vancomycin other than a small study (19 kids) which was reasonably successful. The GI consultant has one other kid who is being kept healthy on the Vancomycin, as it's obviously not considered a first (or second) line treatment. It's action is not fully understood, it could be killing a bug or have some anti tnf properties at the molecular level.

I just thought I would throw it out there as there is not a lot of information about it around.


Well-known member
Good for you! So happy you found something that works. I happen to be on another forum (SCD) where a lot of the kids are helped with antibiotics and O has trailed quite a few herself.

Long may your success continue!