Day 6 - Sarah

Intravenous Patient

In 1999, aged fourteen I was diagnosed with Crohn's disease, but it was in 2007 that nutrition became a problem for me. I was finding it extremely difficult to get all the nutrients my body needed through food and even with nutritional supplement drinks I was struggling. It was then that the doctors decided I should have a percutaneous endoscopic gastrostomy (PEG) tube to supplement my diet. This worked for about eighteen months until I became really ill and needed a third Crohn’s-related operation. My surgeon explained that my bowel was rotting away and the nutrients from the PEG were feeding the disease and not my body; I weighed only five and a half stone. The operation left me with only 75cm of bowel and I was told that I would need total parenteral nutrition (TPN) for the rest of my life.

After the operation there were a few problems, which saw me in intensive care with sepsis, but thankfully after the removal of the Hickman line and antibiotics and TPN through a temporary peripherally inserted central catheter (PICC) line I got through it and had a new Hickman line inserted.

I was sent home in 2009 with the instructions to have a three litre infusion of TPN overnight, seven nights a week - my weekly prescription consisted of three 'fat' bags and four 'vitamin' bags.

Over the years, and to the astonishment of my nutritional team, my remaining bowel seems to have adapted and began absorbing more nutrients and calories from the food I eat and my infusions have been reduced to three infusions of two litre 'vitamin' bags a week, whilst maintaining a good weight and eating as much of a healthy diet as I can with plenty of veg, although it is mostly a low-fibre, high calorie.

When I was first told I would be put on TPN I was devastated, but the TPN helped me gain weight making me feel and look better. My surgical wounds healed really quickly (at least I felt like it did!) and although it was a pain in the bum to do every night (I still call it my ball and chain!) it was only overnight so I was free and well to do what I wanted during the day.  My family viewed it as a miracle - my mum says it saved my life.

In 2010 I decided to see if there was anyone who might accept me for me. I met a man via the Internet and we started dating.  On our third date I told him about my Crohn's, my stoma and my TPN and he was absolutely fine. He said as long as it made me healthy and happy then he didn't mind. In fact, after three years together he asked me to spend the rest of my life with him and we will be getting married on 23rd August 2014!  TPN is just part of our lives - he says he forgets about my 'iPod line', as he calls it (my Hickman line) when I'm dressed, and even when connected, the pump doesn't keep him awake.  We holiday in the UK so that I can easily take my medication away with us and because, to be honest, I find the idea of organising to go abroad a bit daunting and envisage it to be quite a stressful process.

My one wish: It's a bit of a superficial one, but I wish my Hickman line wasn't so long, as I have to roll it up a lot when I want to go swimming and sometimes have difficulty covering it with a baby ostomy bag, so if it was a bit shorter this would be a lot easier.  However I think if this is the only thing I have to complain about, I should count myself lucky, lol!

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