From Crohns disease to a bowel transplant being a patient isn't easy - 080212

We left early for the trip back to Oxford and found that for once there were no snow delays, no icy roads, no stupid traffic delays and we were there in about an hour. My check up always starts with bloods. I am greeted with about a dozen test tubes and then is my favourite game of "hunt the veins!" Trouble is I know who wins and it's not me. A few attempts later and the joker gets played "let's use your picc line" and they do and problem is over. Having said all of that I know that the picc line already about to walk the plank and may not be around forever so at some stage these random stabs have to hit blood. There is an ongoing worry about the risk of infection with the line so whilst I have managed to get a stay of execution for now I am not sure how long that will actually last.

I had my usual scope which seems to be fine and the key thing is that the bowel looks pretty good. I still seem to have a bit of bleeding around the stoma but I don't think it's anything too serious so we agreed to leave it be for now. In keeping with the incredible standard of care and attention that I receive there the dietician had spent quite a while reviewing my feed issues. The feeling was that whilst it isn't a disaster it is still something that needs to be sorted and she is confident that it will be. I hadn't realised that the gut literally has masses of bacteria in it so identifying the problem bacteria isn't so easy. The previous antibiotics were not strong enough so I am now on another ten day course of stronger ones. The idea is the same that they will get rid of the bad bacteria so that eventually I can take other meds to put back in the good ones. At the same time as changing my antibiotics I have a new feed to try. Hopefully the combination of the two should knock things in to shape now only time will tell. You can't help but come away with a feeling of complete trust in the team. The care and attention is second to none and I am certain that if by some chance these changes don't work then there will be other solutions. Sometimes it is a bit of trial and error and although at the beginning I found that quite frustrating I think that I understand things a bit better now and there isn't always an immediate solution.

In keeping with trying to be weaned off the picc line I have been given special anti sickness patches which are supposed to last up to 72 hrs. You stick them on behind your ear and I guess they will work in the same way as pain relief patches. Sickness is probably still one of the biggest factors in my day and one of the symptoms of the bacteria problem is feeling sick. Well I promised to give these patches a go so starting tomorrow I will. At least I still have the picc line and meds as back up. Will keep you posted with what happens, but I have to admit I am very nervous about this change. Not because I feel so attached to the line but more because I have found that giving the drugs through the line is the most effective way but hey let's see.

I will be back again in two weeks for a further follow up and will continue to keep them updated in between times so tomorrow the new feed will start - don't worry I will keep you posted!!

Finally I can't end my blog without commenting on the fact that today, 8th, is the same day that I had the transplant a few months ago. Although it does feel a lot longer than just a few months I am already starting to think towards the future and the key time of having my stoma reversed. It is funny how we always say at home that it has already been a few months whereas the transplant team say, well it has only been a few months. I guess that shows the different emphasis we place on our recovery timeline and does serve as a reminder that actually it really has only been a relatively short time.

I thought that I would finish with another photo from the rogues gallery. This is my impression of sleeping beauty, yes I know I needed a shave!! I am on the high dependency section of the ward having come out of intensive care.

More tomorrow so take care x

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