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Guest Blog- Sue's story

Hi! My name is Sue and I met Natalie in the Intestinal Failure Unit at St Marks this year. I have had Crohns since 1986. Crohns is similar to Ulcerative Collitis (UC) but can affect any part of your gut, from your mouth to your bottom, wheras UC only affects the large bowel. I had my first operation to remove all of my small bowel in 1987 and I was put on steroids.

Because of being on huge doses of steriods for such long periods of time I developed Addisons. The steriods destroyed my adrenal glands which mean that my body does not produce adrenalin. This can be really dangerous and I have to carry an injection with me at all time. If I got into an accident I could go into a coma. The injection would just need to be injected into my leg and my husband is also trained to do it incase I am ever too unwell to do it myself. I had to use it when my Mum died.

I had to have my second operation in 2000 and ended up with a stoma and a fistula. A fistual is an extra opening from the bowel to my stomach so I have this to deal with aswell. Because it seretes mucus and other stuff I cover it with a tiny stoma bag that they use for babies. This makes it easier to manage and stops it leaking onto my stoma and causing that to leak. After the operation in 2000 I ended up on life support for two weeks because of complications from the Addissons. I was in hospital for three months and wasn't allowed to eat during that time. I now have a Hickman line and ,like Natalie, I have 2 litre of fluids every night through it.

I am very lucky though. I have the most wonderful husband who does a lot for me (and kept us all supplied with toffee bon bons and buns from the village bakery while we were in St Marks!) I have five great children and 4 grand children and they all keep me going.


Info on Fistula's from Crohns and Collitis UK can ne found here
Info on Crohns Disease from NHS Direct can be found here
Info on Addisons Disease from NHS Direct can be found here
 

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