Well it has been almost a week since I blogged last and I thought that it was time for a further bowel transplant update. In truth there hasn't been a huge physical difference over the past few days. The reality is that I can't eat very much at all and when I do it pretty much re emerges inside about 30 minutes. I guess at least that has confirmed that the stomach really isn't working properly. It is the same thing with drink, about 1/3 of a glass is fine it is the other two thirds well they don't go down that well.
Aside from the stomach the bowel is pretty good. Last sets of bloods were ok, just can't quite get rid of the bacterial overload issues. The foul smelling burps are still there together with bloating but I am pretty content to know that it will be a few months before things settle. I am on a combination of 4 different things daily so eventually it will kick in and work. In the meantime the combination of all things above means that I am still stuck on my enteral feed for up to 14 hrs a day. I was asked to try and put some extra feed through my tube in the hope of boosting my calorie in take and also increasing my protein levels and other nutrients. Unfortunately it started to block my Pej so after finally managing to flush it free I have given that a bit of a wide berth. Am back at Oxford on Thursday when they are tying to coodinate the balloon dilatation with my scope and biospy so let's see.
As I said not a huge change in my physical well being but mentally I have been trying hard to refocus and start to put a plan of action going forward. I know that plenty of people say that you shouldn't plan or have goals because what happens if you can't reach them or what happens if you do reach them, what's next? For me though having goals and knowing that there is a plan in place allows me to cope especially when I have weeks like this last one when there is no obvious physical improvement. With my stomach, my surgeon has a plan in place, I know what he intends to do and actually even if it doesn't work I think that I can cope but not having a plan makes it harder as you feel that time drifts by.
Trying to put plans and ultimately targets to reach seem to be playing an increasingly important role in my life and by default in my recovery. I am actually not sure why or even how it started but I just feel I need to constantly have things I can try to do or plan to do. I have tried to put a plan in place with this blog, to grow it and reach more people in the hope that my experiences really can help others. In a way it helps me feel useful and worth something whilst helping others. There are so many fantastic people who create communities, web sites, forums etc all with the goal of helping share experiences and ultimately provide comfort for patients and their families. I didn't have any plan when I first started but now it has become a very important part of my life and is also a kind of therapy. Being part of a community like the ones I am part of all around the world and the charity work that I am incredibly privileged to be part of is another important part of my life and just enables me to move forward.
I am incredibly lucky to have an exceptional wife and kids; a loving family and wonderful friends and each one of those elements helps me in different ways to cope with things. In truth I am not sure if I am joining together all these elements and trying to fit them in to a box when they don't actually belong there. On the other hand I have never been through this roller coaster called a bowel transplant before. Should it all be this complex? I mean I had bowel transplant surgery, am recovering from the surgery and it will hopefully change my life and that of my family. Shouldn't that be it?
Catch up soon