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My continuing journey

Posted Jun 17 2012 8:39pm

Friday, 15 June 2012

10.45am

I never knew that walking around with a feeding tube and ruck sack would attract so much attention from passers by. The odd glance or curious look maybe but to have adults staring at your "personal possessions" while you queue at the post office or are out walking the dog is a new occurrence for me. It's a feeding tube I scream, except I don't. In my mind I do but in reality I give a pathetic smile and carry on.

It does raise though the question of what people's perceptions are of normality. I suspect that every single person could tell you a very different story but when you are out in public it is only actual visible differences that mark you out from the crowd. In reality that is both a positive and negative when coping with ibd and bowel transplant recovery. I walk the dog like any other owner would and I drive around like anyone else yet at the moment my feeding tube makes me stand out when in reality that is an accessory, its my new transplanted bowel that is the real difference. Maybe as 3d glasses and x ray vision catches on people will be able to look beneath the surface. Yuck what an awful thought but you get my drift.

The last week has really seen a continuation of stoma output issues and always at the worst possible time. Today could prove to be my very own suicide mission as I am on a train for 2 x 1hr journeys with no loos in sight. Perhaps I should have cemented up my stoma beforehand but I guess this is my own version of Russian roulette. Quite exciting in a bizarre way.

With output pretty much around 2litres a day and sickness intermittent I have been juggling feed and hydration issues. It becomes a daily challenge but actually the real challenge lies in continually having a feeding tube attached. There are plenty of days when I wake up and think I really can't be bothered to put it on. Then I get downstairs, feel guilty and on it goes. Pathetic really, even at 43 I still have agreements with myself all the time.

Then of course there is the food argument. The sure fire way to read my dependence on feed is to eat a bit more. I know that and my wife knows that yet why does it still take her to remind me to eat. I have set daily reminders in my phone, I leave notes to myself next to my computer (as my wife says I spend more time with Lola the laptop than anyone else) but the truth is the brain isn't yet shouting at me to eat

I have managed to remember to have some breakfast so that's a start. Everything else gets eaten because others tell me it's time too not because I feel hungry. Guess I had better stop moaning and start eating. Perhaps someone can describe to me what it is like to love your food so much you can't wait to eat it. Where to those thoughts come from?

My dietician did dangle the carrot (not food again!) Of a stoma reversal as a possibility over the next couple of months. Excited yes but there is going to be a trade off somewhere. Just don't let it be having to eat broccoli every day. It really is great though to think that the reversal is back on the agenda again. I talked about the reasons for it happening on so many occasions now I can almost touch it.

Before I go I just feel I need to have one quick rant. NHS medical care vs NHS administration. One is like having an Aston Martin (yes if the chief exec is reading this I'm happy to have one as sponsorship) and the other is like having a bicycle without the wheels, saddle and chain. I know that admin in healthcare is generally a problem but my question is why? How difficult can it be to coordinate supplies, get new meds, blood tests, pick up and collections. I just don't get it so please if you understand why the medical side can be so amazing but the admin so shocking please explain. Otherwise I think I will have to get my favourite show back The West Wing and ask President Bartlett to sort it.

I have just arrived at my destination for today. Headquarters of the London 2012 Olympic Committee. I am very privileged to being given a look behind the scenes. I came though without my feed on. Perhaps sub consciously it was the first time that I didn't want to wear it in public or perhaps I just listened to my wife who said the travel would be easier without it. Who knows but either way no one looked where they shouldn't have unless of course they had x ray vision.

Till the next time
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