From Crohns disease to a bowel transplant being a patient isn't easy - 140112 (From St Albans & Harpenden Review)
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From Crohns disease to a bowel transplant being a patient isn't easy - 140112
Sorry that I didn’t blog last night. In truth I was knackered and I had to put my feed back on which caused the inevitable output problems. So after watching Hustle I climbed in to bed.
Once again I can only praise my dietician who has been on top of the problems on a daily basis. I even got a phone call last night to talk things through and all this while she is still in holiday. You are probably bored of me praising the team at Oxford but to be honest the only thing they don’t do that well is to promote themselves and their excellence. So if I can do that in some little way then hopefully it can help them and other potential bowel transplant patients.
It transpires that sorting the bowel out is slightly more complicated that just adjusting the feed. My 2nd anti rejection drug that I was taken off stays in the system for up to 2 weeks and also affects the absorption rate of the bowel. That coupled with the fact that one of my anti sickness drugs causes the stomach to empty at a quicker rate means that it isn’t so simple to sort.
Anyhow I have been told to reduce the volume and rate of flow of the feed and to not put it on every night. I will then see the dietitian on wed to go through things but it shouldn’t cause any nutritional issues for a few days. As I have mentioned before certain foods don’t absorb properly. I tried a bit of chicken yesterday and out it came roasted and ready for eating again! So the suggestion is to stick to yoghurts and light things for a few days. This will also help the bloating which has become a big problem for me.
Yesterday for the first time in ages I fell asleep on the sofa in mid afternoon. Two hours later I woke to find all the kids friends gone and I hadn’t heard a thing. I guess it was just a sign that the body isn’t yet ready to run at the speed I would like. I did feel a bit of an old git though.
After dinner it was time for Hustle, one of the greatest shows on telly. If you didn’t watch it go on to the iplayer! Then it was off to bed and the usual journeys to and from the bathroom in the night. Still as I write this the feed is off and I have had some yoghurt.
Will catch up properly later its time to wash up the breakfast things.
Before I do go I just wanted to highlight one thing for you. This July will see my charity hold its 3rd Paris to London bike ride. 180 miles over three days and it is incredible fun. If you want to know more then feel free to contact me or go to the site www.guts-in-motion.com Alternatively if you or anyone are keen to donate and not ride you can now do it via text.
if you send a text to 70070 with the words GUTS99 £x replacing x with a number then that goes straight to the 3Cs. Groovy eh? The 3Cs is our registered charity. To date we have raised £150,000 but we need more. It would be great to see you on the ride.