Back on 'feeds'

So we came home on the steroids, and noticed quite soon he felt a bit more tired than we were expecting, usually on steroids, and initially this time too he is pretty 'bouncy' and a bit moody, but not really this time.

By the 2nd week of being home he had more frequent and softer stools, he also went up to London for his 2nd dose of Vedolizumab and a clinic appointment, it was a long day we left 9 and got home at 9! His doctor was happy to keep weaning the steroids and said to keep an eye on the tiredness and not to worry unless he also developed bowel symptoms.
By the 3rd week he started on the Tuesday with very loose, quite bloody stools. They immediately wanted him in for blood tests to see if anything else was going on such as a virus, but he seemed well in himself. The results of the blood still showed an off kidney function plus his white cell count and specifics were lower than ever, even when he was taking meds to deliberately suppress them. All afternoon Wednesday he complained of stomach pains and nausea and by late Wednesday eve he started a cough, with the low white cells the GP wanted him on antibiotics and he had a day off on Thursday. We then made the decision with his nurses that whatever was going on he would benefit from a few days of gut rest and started back on his formula feeds, this time orally, and he managed a half day at school Friday.

By the end of the weekend we felt the bleeding had improved but the consistency was still very loose with some soiling so the dietician said she'd rather keep him on the feeds for a further week and review.