So I took a decision much against the wishes of the medical team over this last week past. At my monthly trip to the clinics I mentioned to them that I wanted them to remove the gastrostomy tube that I've had in for four years now to help me maintain my weight.
I honestly wasn't being rash, I had thought long and hard about it, especially after the period where the site for it on my stomach was leaking acid all over my skin and burning it. It was happening every time I sat upright which is kind of important as those were the times I was, for instance, using my nebuliser and eating. One Saturday night when I had a friend in visiting I was sitting up talking to her and all of a sudden noticed my t-shirt was saturated and my skin was burning as my stomach juices were literally pouring out and burning the flesh. I lied to her (obviously) and said it didn't hurt but it wasn't the most comfortable evening I've ever had. I called out the District Nurse on the Monday and she came out and replaced the tube and gave me a spray that would act as a barrier on my skin to any more acid that did come out. This was great at its job but the fact is acid was still coming out of the site when I sat up, which was clearly not right.
Now I hadn't used the feeding tube in three weeks anyway so, in my mind at least, I could maintain my weight simply with the meals I was eating but I had to convince my consultant that it was ok for me to survive without it. Their fear was that, even though I was a stable, decent weight that if I caught an infection I could lose the weight that I have spare quickly and fall under the limit imposed by the transplant team. I calmed their fears by telling them I had got a chest infection over the holidays and lost the grand total of 1kg, which left me another 6 to spare. All of which was achieved without resorting to using the overnight feeds.
Another, longer chat with the dietician along the same lines ie that I was doing well without the feeds, and I eventually got them to agree that I could get the tube out. So this Thursday just past I got the nurse out to the house to remove the piece of plumbing that's been sticking from my stomach for four years. So, in what would turn out to be remarkably low tech procedure, the nurse took the water out the plug that held the tube in place out and then simply placed a dressing over the hole to let it heal all on its own. The only thing I had to do was give it a bit of time for the internal wall of my stomach to close over enough to cope with food and drink. I now have what looks like a second bellybutton that feels very strange as it starts to heal and knit together to heal completely.
In the first night I did what I promised I was going to and slept completely starshaped spread out all over my bed on my front, without any bit of plastic to stop me. There's lovely.
