Day 5 - A very full life… but hold the long-haul travel! - Molly’s story

I’m nearly seventy-six years of age, but I’m slim, active and take part in many enjoyable activities. I’ve always tried to eat healthily but from the age of nineteen I had Crohn’s disease and eating was a problem. Now I’m on PN every day (an operation to remove most of my large and small bowels took place in 2010), however, life has never been so good. I sing in a choir, play in a small recorder ensemble, play the guitar - leading the singing session for toddlers and babies at my local library, go swimming twice a week, take long walks, ride a bike, go to plays and concerts and generally enjoy life. The hassle of long holidays around the world is not for me, but short breaks in the UK - mostly staying with friends around the country is very enjoyable. I’ve done the travelling before and although there are lots of places, I’d quite like to visit, I really can’t be bothered with all the difficulties associated with going abroad.

Going out always requires thought as to how and when I connect my PN. I must plan. When a concert is loud and informal, I’ll connect before it, but for a classical concert, where a silent audience is a necessity, I will connect afterwards. I never wear my pump and PN at the cinema as I know people will hear it and may be suspicious - I mostly go to matinees.

With virtually no bowel, I have a stoma of course. This also requires a period of adjustment, but now I have no pain and I can control - to an extent - the stoma activity by regulating the time and the amount that I eat and drink. That of course is sometimes a nuisance and I always try to meet with friends for lunch rather than an evening meal to limit the stoma activity overnight. I talk about my condition to anyone who shows an interest as I think it benefits all fellow sufferers for other people to realise that there are many hidden disabilities that people cope with daily. Strangers are amazed and fascinated when they find out about my feed and stoma. It also makes them appreciate their own simpler lives.

Never be afraid if you are told you need intravenous feeding. You’ll very soon get used to it and will appreciate the miraculous way it enhances your life.

Many thanks to PINNT for the help and encouragement I’ve received over the years.