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A day in my life as a person with a Fistula and on TPN

Between 7 and 10 am: Get up and take down my TPN when it's finished, which took around 30+ minutes or put up another bag of fluids ( mostly Saline to keep me better hydrated as drinking anything would only dehydrate me more) this would run over 4 hours and sometimes even longer. (on rare occasions I would be 'hooked up' to fluids for 23 hours and spending 1 hour taking down and putting up my TPN and Saline) once the TPN was taken down I was 'a free man' and went to have a wash and then came breakfast (which went from getting up till almost going to bed :D ). Now for someone with no intestines I sure ate a lot, because for the 1st time in my life I could just eat without discomfort or pain and being a 'retired' chef I was cooking none stop. But sadly I was not getting any nourishment from it.

11/12 Noon: If I could tear me myself away from the food :-D and TV and have the energy I would maybe go for a walk to and take some photos or take the bus somewhere and just try to sit as comfortably as my body would allow and not for too long or travel too far. I was restricted by my energy and the Fistula bag because if the bag leaked I couldn't change it till I get home, so I would always have my phone with me to call mum or someone to come and get me.

2pm: I would be back home by now exhausted if I had gone out. And if I had stayed in I'd either be sitting in my massage chair (I could not sit on a sofa or normal arm chair because of discomfort and the size and stiffness of the bag.

Rest of day was either spent watching TV or chatting with friends on Facebook. Now Facebook can be either a real blessing in that it allows you to keep in touch with friends all around the world, so you never feel alone. Or it can be an absolute curse because you'd be on it all day :D and also you can see how everyone is living their lives, doing the things you wish you could do or being in places you wish you could go to if only you were not in the situation you were in. Don't get me wrong, I'm always happy that my friends have happy and successful lives and relationships, it's just that I wished I could be in the same situation.

4pm: Take 4 litres of TPN out of fridge and lay it flat on the dressings trolley to get up to room temperature
7pm: Grab a quick shower, try to stop eating, put my TPN up and then it's time for changing my Fistula bag (which could take anything from 2 to 4+ hours depending on how badly the skin was burned from leaks . I managed to surf the net, chat on MSN and Facebook as well as watch a movie and all while suctioning my wound(could be why it took so long :D ). Who says men can't multi-task?!! Beat that ladies ;-)

10/11pm: Time to go to sleep, just night drainage bag and I'm ready. As with my stoma bag I need to get up a couple of times in the night to use the toilet, bound to happen when you have 4-4.5 litres pumped into you over night.

A day in my life as a Small Bowel Transplant recipient with a Stoma

8 am: Get up and take my morning meds, then shower, change my stoma bag and then breakfast. (9 times out of 10 it's porridge with sugar and supplements of protein and glucose for a little more energy Then it's time for my daily bowl of porridge to which I add sugar and supplements to boost my calories and protein.

11 am: time for my Immune suppressants only 2 tablets

1pm: Lunch time mostly consisting of pasta or potato if at home time for my lunch meds, 10 tablets

3pm: another 2 tablets

6pm: Dinner time 16 tablets. This is the time I really eat, especially if I've been out since lunch or even before lunch. I pretty much keep eating till I go to bed. I know what you might be thinking, 'not the best thing to do before going to bed', but I'm always very hungry around this time.

11/12 pm: 13 tablets and then off to bed after a shower. If I'm lucky I only need to get up once in the night, but it can be more. Then 8 am rolls around and another day starts.

Depending on how I feel and how much energy I have I go out during the day, to visit friends, shopping or just drive somewhere for lunch or look around and of course going to Inside Out coffee mornings J I have to think about what I need to do every day and plan how to get the best out of every week, so I try to plan days of rest between appointments or going out as my body tires quite quickly and I know I've over done it when I start shaking and feeling cold. But I'm a stubborn little so and so and always try to push myself as much as possible, I pay for it in the end by being very tired and grouchy for days afterwards :-/. I don't want to drone on moaning and sounding ungrateful, sorry if I am.

Most of my time is spent going to medical appointments either local (Surrey), St Mark's or even Cambridge. They range from blood tests to an ileoscopy make sure there are no signs of organ rejection, right up to psychotherapy sessions and many things in between.

Now you may have noticed that this story jumps around a bit from 1 thing to another and then back again later on, I'm sorry for this, it's just the way my mind works (and I couldn't afford an editor :-D ), I hope this doesn't spoil the story for you.

In December 2010 I bought my 1st pet in 20 years..... A Bearded Dragon called Hannibal(the Cannibal) after a character from a book and film. Now considering I am immune suppressed, a reptile may not have been the best choice, but I haven't had an infection from him yet (touch wood). Considering he can't speak, (in fact he doesn't make a sound), Hannibal makes a great pet and companion because he's the perfect size to hold and contrary to believe he's got a soft warm side to him, as well as making me smile and laugh J. I've always had a certain liking for reptiles and think they get a really bad reputation because of the lack of understanding and representation in books and stories like the Bible and the Jungle Book, as well as films. But if you get to know and understand them they're just as much fun as other pets. I love my little guy and prefer him over birds, rodents, cats and dogs. J How can you not like that little face??? :-D

I 1st discovered Inside Out in early 2009 when I still had my Fistula, but found that I wasn't quite ready yet and thought that having a fistula was a million miles away and that I wouldn't fit in (in hindsight I was wrong, sorry) but then in 2011 I tried again and found that I belonged and enjoy meeting all of you that attend as well as the Stoma nurses and the legendary Bob! J I'm looking forward to getting more involved and being a member of the committee.

I couldn't finish this little snippet of my life's story without thanking everyone in the NHS who has looked after me and has helped in my operations, care and recovery. In particular Dr Simon Gabe who is a phenomenal man and Dr, Dr Steve Middleton, his team and Andrew Butler at Addenbrookes Hospital, Sarah, Abigail and Hilary in the Stoma Department at St Peter's Hospital, Chertsey, you'll always be my 3 angels :o). All the nurses who do such an amazing and difficult job looking after all of us and make us as comfortable as possible; they are all true angels in uniforms! ;o)

Thank you once again to my Donor's family and friends for making a very difficult decision and honouring his/hers. Hope he/she had a long and happy life.

And a very big thank you goes out to my family and friends, who have put up with me through thick and thin and for their support through not only the last 3.5 years but also my whole life. I love you all! (Even though I don't say it enough)

And last but by no way least, Bob for encouraging me to write this and of course you dear reader for reading it!

Jan :0)