It has now been a week since returning from my last stint in hospital and for me so much has happened but that may not seem the same to you reading this. I guess for me it has always been about taking small steps forward, always knowing that I have a goal to aim for and coming home was a massive step forward.
With my stomach firmly open and ready to play I have started on the trail towards eating normally. It is funny but one of my lovely friends said to me what are you looking forward to eating most. Bizarrely I couldn't actually answer her as it has been so long since I have eaten anything much I haven't really thought about food. Anyhow as the week has worn on so food has slowly started to come back in to my life. It is still not natural, I mean I don't get up in the morning and even think about breakfast. I do think about taking our dog Waffle for a walk but not really about breakfast. Having been told to start with cakes I have sampled cherry cake, lemon drizzle cake, apple cake and other varieties. Even my friends that come by to say hello give me their cake orders before they arrive. One was so put out that there was no more apple cake left that he almost didn't come, that was until I told him my daughter makes a mean lemon drizzle cake and five slices later he did leave a happy man.
Progress has been made though beyond cake and I am now eating different things throughout the day. I think raspberry ripple ice cream has been my favourite thing so far although I am a little upset that my favourite mint chocolate flavour hasn't made an appearance. The one thing that hasn't yet happened though is the retraining of my brain to start thinking about food. Thankfully my wife does appear with a plate and some food on it at different times of the day so the great bowel transplant foodathon has begun. It has though also coincided with the great stoma outputathon. I am averaging over 2 litres a day and although I do put about a litre of water back in to my bowel most evenings this constant emptying has become a nuisance. I know that I shouldn't moan so apologies for that.
One moan that I think I am entitled too is the state of toilets. I met with someone I hadn't met before to go over some future (seems distant at the moment) work ideas, together with a friend, in a Starbucks. The weather was beautiful and so sitting outside made perfect sense. Anyhow whilst they made small talk I went off to the loo for an "empty". So you walk in to the loo and then what, well I have to place my enteral feed bag down, squat down and empty my stoma bag. Pretty easy, done it hundreds of times; but what do you do when the loo is filthy. Didn't want to put my feed bag down on the floor as it was soaking so I found a dry spot in the corner. Then I realised that my lead from my bag to my stomach wouldn't stretch far enough for me to lean over the toilet. So I hook it over my shoulder carefully twisting my body so as not to let it drop in to the toilet. Now I have to squat down, except at home I would kneel. Can't kneel here as the floor is dirty and wet. The light bulb moment! I know I will empty in the sink and then wash it all away. I carefully open the end of the bag and empty a little in to the sink, then turn on the tap to flush it away. Crikey the tap doesn't work and the water only trickles out, now what am I going to do? Ok I know I will carefully go over to the loo and trust my leg muscles to stay strong whilst I squat. Over I lean, oh no a little leaks out of the end of the stoma as I haven't closed it fully. So there I was, crap on my trouser leg, crap in a sink that doesn't work, my back pack by this time had swung off my shoulder and in to my tummy and all this when I know two people are waiting for me......
Suffice to say I sorted things out eventually but why do shops keep their toilets so filthy? Our conversation carries on, I am in full flow, things are doing well and then disaster. My bag has filled again very quickly and I need to do something. So I do what I think many stoma patients have done in the past and ignore things for a bit. Stupid eh, I mean where is it going to go. It is not going to think I know I will dribble back in to my bowel. Eventually when I think everyone is relaxed, I go and do the whole toilet routine again. This time though my back pack decides to swing round off my shoulder and in to my stomach just at the moment that I am emptying my stoma bag.
Anyhow - it was a positive get together and hopefully it wont be long before I can actually start to think about work.
Food was going very well until last night when I decided to do a bit of recycling. I wouldn't mind but it was only an omelette. Immediately my mind thinks oh great that's the botox over and done with. Then I reckoned it was worth having another go today and see what happens and I have to say that at the time of writing this things have stayed down.
Coming out of hospital this last time I definitely felt a great sense of optimism and decided that as well as eating a bit I would get off my backside and do some exercise. I have been out with the dog 3 or 4 times a day. In fact yesterday evening when I went to go out, the dog stayed in his basket with his eyes shut, I think I shattered him! Total wimp I mean who has had the bowel transplant. I do have another reason for getting fit though. There is an event called the British Transplant Games happening at the end of August and I would really love to try and be well enough to enter the golf tournament. My place has been secured I just need to ensure that my health is ok. If my transplant surgeon or coordinator is reading this then don't laugh. I know I haven't mentioned it before but for me it is something to aim for; a goal to try and reach. I know that I may not get there but it is something to focus on.
My other pet focus of late has been the state of hospital food. Some of you may have seen a report in the UK press that MacDonald's and KFC have been shown to be more nutritious than NHS food. How can that be right? Eating healthy food is essential in hospital especially to our family of bowel diseases yet currently it works out that roughly 80p is all that is spent per meal per person. It's a scandal.
Talking of scandals I am currently in a fight with the government department that deals with benefit payments. So far mine seem to have been stopped without any explanation. Thank you to everyone who has shown support and also offered advice. Believe me this is one fight I intend to win.
I guess I had better sign off now, stoma bag to empty and I can hear the clattering of plates in the kitchen. I suspect that means food. Am back to Oxford next Wednesday for my full MOT am just keeping everything crossed that I am not sick again.