Hi good people
Some of you may know i have had problems with my RIG since having it fitted back in April, due to the surgeon who placed it.
This has been on going, the most resent is it leaking, for the just over week now i can only tolerate 120mls at once before it starts leaking.
That includes anything i take oraly, unless it's really slow and small sips.
Cutting to the chase... i had an appointment yesterday with my Rig nurse and dietition etc.. one of a few to try to sort this problem out. While i was there they managed to get a consultant to come and assess and give advice. They / he wanted to admit me because of not being able to have fluids and feed ie; my version of food and drink for a week, and to sort this tube out. But i won't go in because the last four times i've gone in, they have messed up big time, putting it mildy.
Firstly he asked why i had the RIG as i could manange small amounts of food and could swallow.. and didn't want to listen as to why or what i could.
He gave options and he made suggestions etc as to what could be done, unfortunately there wasn't a lot. I was unsure about them and obviously wanted time to think, but he wanted a desion there and then.
He then said ' Well, as i you're Paliative care, just take the tube out and just let it heal ...... After all you have to face reality.
He was so lucky i couldn't get of the bed. I told him to get out of the room, but he carried on talking, what about i'm not sure as i was too shocked and wasn't listening,I repeated...... You, pointing at him this time, get out now. To which he turned tail and went.
I said about going back to an NG but it would still come out of the RIG site, so it wouldn't really help for the length of time we would need for the RIG hole to close more and stop leaking. If i have fluid either oraly or via RIG it still leaks out the stoma hole.
They have put in a much larger tube and filled the balloon with more water in the hope it will stop some of the leak, it's helped a little but not solved the problem, We are also trying a small amount of feed over two hrs via the pump, a couple of times a day just to try and get something it to me, then upping the amount the next. It's not much, but we don't want to put strain on the hole and just take it slow. Anything is better than nothing at the moment.
They are suggesting another type of tube that goes further down into the intestine, as a temprary measure so we can get the RIG site healed and sorted. I'm unsure what that one is called, I also wouldn't have to be admitted for it, just go in as a day patient, this sounds promising as it bypasses the stomach, but we will see...
They did say about starting again, with a new site, but the problems i've had with this one i don't want to do that and risk all this again, i've had enough.
My team have been doing their very best to get this sorted for me. It's just unfortunate they are based at this bad hospital.
Cat x
