From Crohns disease to a bowel transplant being a patient isn't easy - 02-02-12

I have been trying to avoid the time when the line might have to come out. It is the access point for all my anti sickness drugs. I take 6 injections a day and to be honest wouldn't cope very well without them. The Transplant Coordinator called yesterday and as part of the conversation she mentioned that the surgeon might well want to take it out. Apparently the risk of infection is far too high. In truth I know this and I do understand but I have had lines for so long and always tried to look after them so for me it has been the easiest way to take these drugs. I know that there are both alternative drugs that I can take and even different ways of taking the existing ones but taking them as I have been has been part of my daily routine. All the injections can be done as intra muscular ones but they are very painful. I have been down that route in hospital and they bloomin well hurt. Still if it is the only way then we will have to go for it.

Back in hospital I developed a bad infection that was probably traced back to my Hickman Line so I know that the risks are there and they are probably heightened given my current level of immunity in my body. Still next week will be decision time. I will try and go in and negotiate with my surgeon (so if you read this then you will know my tactics) and although I know he will almost certainly win the argument I would like to know what all the alternatives are.

Tonight we sort of gave up on a very soft diet. Or at least I tried something else - a little bit of chicken. As I promised that I wouldn't talk about stomas etc I won't tell you the outcome. Tomorrow is another day though!

Till tomorrow x

Readers who submit articles must agree to our terms of use. The content is the sole responsibility of the contributor and is unmoderated. But we will react if anything that breaks the rules comes to our attention. If you wish to complain about this article, contact us here