From Crohns Disease to a Bowel Transplant - how did it happen-140512

I thought that I would up date you as tomorrow's breakfast has just been delivered. It will be the first time that I have had breakfast in ages. I always thought that one of my first breakfasts would be poached eggs on toast or maybe eggie bread (not sure that is quite the right terminology but it's what we call it in my house). Anyhow I did get eggs just not how I imagined in.

Two fresh raw eggs have been delivered with a bit of bread and a little piece of butter, all stored in a sealed cardboard box and sitting in the fridge. No one is allowed to open the box until I hand it over the chef. The chef is no Jamie Oliver or Michel Roux no it is a nuclear medicine nurse who will scramble these two eggs and then for extra special flavour add in a radioactive substance. I'm sure you are really jealous at the moment. Come to think of it, I hope there was some milk in that box otherwise it is going to be even more yuk. There must be mustn't there.

So the idea is to eat these two eggs and they will then take images at various points as it gets in to my stomach. That is of course if it even gets that far. I was advised that if I am going to be sick it needs to be done very neatly. Straight in to a round bowel please they have said and certainly don't get it down you or over anyone else, it's radio active after all. Apparently I will not be allowed to hug or kiss anyone for a period of time and may need my own special toilet for a day or two. It is not really painting a great picture in my head at the moment. Feeling a bit queasy already but hey we have to give it a go and you never know I could easily surprise myself and it stays down for 30 seconds not 10 seconds. Here's hoping, and for all my joking I will be doing my hardest to keep my mouth shut for as long as possible.

So all of this is to ensure we get funding for the botox and also just to rule out any other issues. The good bit is that once this is over I am expecting to go home. Not sure if I will need to stay for a little while, I suspect so but at least home beckons. Having gone through three lots of infections I think that I am due out for a while.

This morning has been taken up with nerves for my eldest son. He started his GSCEs or 'O' levels as we used to call them. Either way I think Justine and I were more nervous for him. I'm sure he will be fine though. It is actually incredible how well all three kids seem to cope with me being in and out of hospital. They are really amazing kids and that is down to how my wife has looked after them. On occasions I think I'm just the lodger who chats to them over skype. In reality that is the reason why I had this bowel transplant. It was all about not being an even longer long term patient and every day that goes by is a day closer to normality. Whatever normality actually is.

Tomorrow was also when I was due to speak in the European Parliament. It would have been an amazing experience but if I get back from my luxury breakfast on time then they have agreed to set up a skype link and let me speak from my hospital room. I am a bit worried about that though. I haven't been able to have a haircut, shaving I can sort out but I've got no shirt and tie. Will a tracksuit and t-shirt be ok? Who will do my make up before I go live and shall I have Jeremy Kyle (for those of you not in the UK he is our version of Jerry Springer) or shall we go for the tranquil background of my window and the beautiful view of the other side of my hospital ward. So maybe it will be a good thing if they just read out my speech, I mean with no stylist here how am I expect to speak.

Although I am looking forward to being at home I also know that there are plenty more trips back here planned. Eventually once all my infections completely clear and all the toxins have left my body I will be back to have more toxins injected back in to me via the botox. Then there is the dream of a reversal, so lots to look forward too. Despite all these ups and downs I do feel that there is light at the end of the tunnel and I realise everyday how truly lucky I am to have amazing family and friends to help as well as this world class medical set up. Being part of this exclusive bowel transplant family definitely opens your eyes to so many parts of other people's lives. I have now met with several transplantees and prospective transplant patients and whilst you just assume that we all go in to this for the same reasons; to get our lives back and enjoy being part of family life again, it is not the same for everyone. You see people who know rationally that they need the operation yet are too scared to go for it. You make judgements about people based on first impressions yet when you get to know them you realise that underneath it all you are much more similar than you think. When Justine and I started on this journey we knew that a bowel transplant was the only option to full recovery. That decision was simple for us to make. For some though the easiest decision is actually the hardest decision of their lives. I had just assumed that everyone would be thinking the same way but that isn't the case.

Ok enough now you have probably switched off. From my last post you will have seen that we have found our Josh in the West Wing, are there any President Bartletts out there?

xx

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4 replies. Join the discussion

l was trying to figure out the 140512,
Then l remembered you Brits drive on the wrong side of the road, and state the date backwards as well (compared to yanks, that is)
Don't worry about your appearance on the video link. lf you present as well as you did this post about bowel transplants, all will go well.
Best of luck to you. Thank you for the update!

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yes you are right, we do drive on the correct side and we do write the correct way!!! ha ha. Thanks for the lovely message I will be back with another update soon. keep well.
M

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Gosh, I haven't signed in for a while and then I read your post about a bowel transplant. Once again, I am going to go thru the pre testing for a bowel transplant. I am getting constant line infections from my tunneled PICC and no one can believe that I haven't died from one. The surgeon says it is time so it is with much apprehension that I start the testing. Any info on the procedures and how you felt would be welcomed. It sounds like you are doing great; continue your road to recovery.

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So good to hear from you and I totally understand your apprensions. Where are you likely to have it? After 30 yrs of crohn's I had intestinal failue, was on tpn and my line access was good but my liver was starting to go so I had the transplant before waiting any longer otherwise they would have had to have done liver and bowel. My blog pretty much details everything and if you want the gory details of the weeks straight after the op then click in to my wife's on the right of my blog.

I can't pretend that it is easy but you are far better off having it done before everything does pack up otherwise it will be harder to recovery. They told me it would take a year to fully recover and it does. I would say the most important thing is to stay mentally strong. The physical pain can be sorted but mentally you have ups and downs. Staying strong for you and your family is very important. Please though ask me anything at all. I would be delighted to help you out at anytime. x

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