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So I was hooked up to a machine with a very large syringe on it attached to a pole with wheels on so I could get about. (nicknamed the ogg-pog by my children!) It injected the ciclosporin in to my arm down a tube through a canula at a very slow pace all the time. The upside of this was that I got a room to myself again as the ciclosporin reduces your immunity and there is a risk of infection with other bugs. Because of this I was also on some powerful antibiotics all the time as well as the steroids & pentasa ! They also had me taking paracetamol all the time for the pain, apparently if you keep taking it, it stops the pain getting started too badly, and it did help although not as much as I would have liked, there was also an injection of other painkillers that I could ask for if I needed. At this point one of the nurses suggested that I should ask to see the dietician and get some elemental drinks. Elemental drinks are special cartons of a flavoured drink which provides you with pretty much all you need to survive and they don’t even get as far as the colon so they can’t aggravate any symptoms. Eventually the dietician turned up and I discussed the situation with her, she initially wanted me to eat cheese & cakes to build myself up!, but the doctors had told me to avoid all dairy products! So I wasn’t going to do that, so she prescribed me the elemental drinks, 8 a day which would provide me with about 2000 calories a day, which I needed. The elementals were great – I could tolerate them well, they didn’t cause me pain and it was nutrition which I badly needed. I can’t understand why I wasn’t given them straight away but I suspect that it was a case of the doctors just focusing on drug treatment and not considering other options, as well as possibly a cost issue. Elemental feeding I have since discovered can be used as a treatment instead of steroids to get things under control, although living just on drinks for several weeks might be difficult to do from the point of view of not just wanting some real food ! You can find out more about Elemental drinks here or here . If you’re having a flare up I would strongly recommend asking your doctor for elemental drinks or just buying them yourself, they really help to give you a boost whilst also giving your colon a rest. There is also a good book about Elemental Diets here

Colitis Breakthrough

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