13 Apr 2016

Leonie Scott by Amanda

My mother, Leonie Scott, was a renal patient at Manchester Royal Infirmary and Macclesfield Dialysis Unit and sadly she passed away early in 2015 from Encapsulating Peritoneal Sclerosis (EPS). My Mum was my biggest inspiration and my biggest source of support. She understood exactly what I was going through with my own illness and held my hand throughout the multiple surgeries I have had for my Crohn’s Disease. I am passionate about raising awareness about EPS and raising money for Kidneys for Life. I started to use exercise to help me to overcome fatigue and increase the movement in my digestive system so I could hopefully have a better quality of life and it really has helped me!

When I first got my stoma (which I promptly named Ludwig after Beethoven), I never dreamt that I would be physically fitter than I was before my operation! Post-surgery I had really problematic chronic fatigue and I had always been a person out enjoying life so to be driven to bed by fatigue was really frustrating, not to mention depressing. Eventually, I was referred to an endocrinologist who specialises in chronic fatigue and she diagnosed me with complex medical fatigue with the underlying issue being my Crohn’s Disease. She suggested that gentle exercise would help me to overcome my fatigue amongst lots of other techniques I could use to help me. So I started swimming and slowly but surely I started to feel better. Scientifically exercise releases endorphins which helps to fight against things like fatigue. However, whilst swimming, I came across a quote which was emblazoned on the wall:

‘Champions aren’t made in the gyms. Champions are made from something they have deep inside them – a desire, a dream, a vision. They have to have the skill, and the will. But the will must be stronger than the skill’ (Muhammad Ali).

I began to desire a challenge with my stoma and so I took up running.

At first it was difficult. I had to focus on keeping myself hydrated and getting the balance of my Imodium right so that Ludwig stoma wasn’t gushing output out as I was running. Yet, gradually, I built my distance up and 8 weeks after starting running I completed my first 10K which must have been the worse race to pick as the course was entirely hilly!! My poor thighs afterwards… However, it was a great achievement and I felt mentally and physically better, not to mention more confident about what I could achieve athletically with my stoma. Thus, I began training for my half marathon. I have since gained a medal across 5K, 10K, half marathon and marathon distance.

I had the honour of being picked to be one of the faces of the Great Manchester Run 2016 and my advert is currently on the television.

I run to raise money to help others like my Mum, in the hope that one day the outlook for EPS patients will be improved.  Running also helps me with my disease; it helps with managing my disease and pain but mostly it gives me a desire to overcome the obstacles placed in my path that having Crohn’s Disease presents me. I find that exercise helps to give me a positive frame of mind. Having a stoma was no obstacle to completing the races and at times it was easier to run with a stoma than without – I wasn’t worried about toilets along the way! Now, I am training for triathlons!

My Mum taught me to never give up and to always work towards achieving my dreams. I hope that she will be looking down on me with pride and to borrow a quote from A.A. Milne, I really have learnt that:

‘I am braver than I believe, stronger than I seem and smarter than I think’ since she passed away.

Amanda Scott