I decided to do nothing for a few days and just reduce my oral intake but still I was being sick. Why is it that you are always sick at the most inconvenient time. I mean with me it was around 2am. I'd had my meds, caught up on another 20 mins of Homeland (my wife kindly recorded all the episodes that I missed during my last stay in hospital) and was dozing beautifully then you wake up with a jolt and it is that quick dash to the bathroom. In my case our bedroom door creaks when you open it and the floor boards in the hallway also seem to make odd noises so there I am trying to get to the bathroom quicker than Usain Bolt runs his 100 meter finals whilst at the same time making sure I am not sick on the way and don't wake up Justine by opening the door too quickly or the kids by standing on the wrong floor board. Come to think of it my trip out of bed is really like a scene from Mission Impossible. Oh and come to think of it I probably do look a bit like Tom Cruise, perhaps not an exact match but at 2am who is looking.
So the sickness continued and I was called in for my usual MOT at Oxford a few days ago. Every time I go it is always the routine of umpteen bloods before you start and every time I walk in to the room to have them taken the lovely phlebotomist doesn't even look at me, he sees my name and just calls for a doctor to have a go instead. He is always muttering something about not having any veins to take blood from. I think it is just too many test tubes to fill and it would take too long. Next time I might dare him to have a go and then watch him go bright red and get all flustered. It amuses me anyhow.
From bloods it was off to see the dietitian for a review. I still have to record everything I do, stoma output volumes, timings of feed etc on a spreadsheet and usually I email that across every few days. Oh that reminds me I had better do one before the bank holiday. By sending things in advance it means that she has time to look at the whole picture and put a plan in place rather than me go though everything and then wait a bit longer for a plan of action. Her feeling was that the sickness couldn't have been caused by the botox stopping working, it sounded more of a bacterial problem. This was then confirmed by the surgeon who was waiting on the ward to scope me. There was no way that the botox could have warn off already. What was happening though was that my new bowel wasn't coping with the food hitting it. Although some food was being absorbed a lot wasn't and in fact it was sitting in the bowel fermenting and then causing bacterial problems that in turn meant my output was high, the bloatedness had returned and I was being sick. On top of that my muscles at the end of my stomach were paralysed open so there was nothing to stop the food coming back up. I guess it is a bit like electronic gates always stuck open. Everything can go in but everything can also come straight back out. Actually that was a pretty crap analogy but to be honest I couldn't think of another one, my mind went blank. Any suggestions feel free to email me.
This is a perfect example of the roller coaster journey that you go on post transplant. As an IBD patient we are all used to ups and downs but after you have gone through transplant you some how forget that the bowel is so complicated and so many different things can cause so many different reactions. Logically your mind says well, I have now had my new hose fitted and all the plumbing work has been done so what can go wrong. Then you realise that just by introducing one thing or restarting a different regime can have a massive impact on how the bowel reacts. I promise that i am not moaning it is just that some days you just want everything to be absolutely perfect. Just 24 hours with nothing wrong to recharge the brain and get the mental strength back to go again.
The scope itself was totally fine. There was almost a look of pride on my surgeons face when he looked on the screen and said beautiful. No one has called my bowel beautiful before, maybe next scope it will be stunning. What that did mean though is that the surgeon would very much like to do my reversal sooner rather than later. I am still having big problems staying hydrated. Despite putting in fluids every day it is very easy to tell when I am becoming dehydrated. Urine output falls, I constantly feel dry and my creatinine levels from my bloods showed that staying hydrated was still a problem. With the stoma reversal I can bring the part of the colon that is left in to play and that will help with absorption.
In the green corner though on the other side of the ring is my dietitian who feels very strongly that nutritionally I am not in the right place for the reversal. My weight is still dropping (not massively) and she would like me to be able to reduce my enteral feed and increase the amount I take orally before any operation. She would also like to see a bit more weight gain. I understand both sides of the argument but so far the Irish nutritional team are out negotiating the English/American surgical team. I tell you what I would love my dietitian to be negotiating my next salary review, she would definitely win any argument.
I left Oxford with more antibiotics and a strategy to sort out the bacterial issues. That in turn should help the sickness to settle and while I am waiting for that to happen I guess Tom Cruise will reappear in pyjamas again tonight around 2am.
Aside from bowel distractions our facebook group Bowel Disease One Global family is growing nicely. Pls click this link if you or any of your friends or family would like to join.
http://www.facebook.com/groups/bdoneglobalfamily/.We are also hoping to tell our story through pictures so if you want to upload anything that connects you to bowel disease, be it scars, wounds, funny pics, family photos you can either go to our board on Pinterest http://pinterest.com/michaelseres/bowel-disease-one-global-family/ or send the pics to me and I will upload them.
Finally I can't end without a quick plug for our 3rd annual Paris to London bike ride. If you are interested in taking part or just doing the last day then please click on the link to the right of my blog post. Every single penny raised goes directly in to research in to Crohn's and Colitis. If you can't ride but fancy coming to the end of ride party then just shout!
Ok I had better sign off. My kids have just got back from school and my son has found a sample of the wallpaper that we are going to put up in his room. It was supposed to be a surprise for him whilst he is away on a school trip. I have told him that it is for me as I am going to decorate my stoma bags with those colours. I think he thinks that I have totally flipped and now despite thinking that he was 100% certain what it was for that tiny element of doubt has crept in. Wallpapering stoma bags, now that would be Mission Impossible!
Till next time