Rob Runs for Tums

On 24th May I will be running the Edinburgh Marathon to raise money for Colostomy UK and St Mark’s Hosptial Foundation in support of my brother James.

James has suffered most of his life with Crohn’s disease, a condition that causes severe abdominal pain, ulcers and bleeding. It can also cause aches and pains throughout the body and generalised fatigue. It can impact all aspects of life because days have to be planned round access to toilets and around taking unpleasant medications with horrible side effects lasting days.

Last year his symptoms got so bad he was admitted to hospital and there was no choice but to have major surgery to remove a large portion of his large intestine leaving him with a stoma. Unfortunately, the initial surgery didn't resolve his symptoms and he still had the old pain and needed the same medication. He was left with the option of trying to live with the impact of Crohn’s or undergo various surgeries, all of which had potential risks and downsides. During this difficult time, Colostomy UK were able to offer support, coach him through his decision making process regarding the various surgical options and help him to see a brighter future on the other side of any potential surgery. He made the brave and difficult decision to have the remaining part of his large intestine removed. This was major operation and I am pleased to say nearly 4 months later he is recovering well and recent tests suggest that this operation has been far more successful than the first. It is still only the start of the journey as he learns to adapt to life with a stoma.

It is estimated that 1 in 340 people in the UK are currently living with a stoma yet public knowledge and suitable facilities are lacking. For example, stoma bags need to be emptied and changed regularly which is difficult without the appropriate facilities. This creates a barrier to access and participation and can create a feeling of isolation. Some adaptions are very simple and Colostomy UK aim to improve facilities in businesses, organisation and public spaces by providing education, advice and literature. They also offer personal advice and support to people with a stoma 24 hours a day, run campaigns to improve awareness, reduce prejudice, discrimination and stigma and to empower people to live their life to the fullest.

St Mark's Hospital is the National Bowel Hospital and provides life changing and life saving treatments and surgeries for vast number of bowel conditions. St Mark's Hospital Foundation funds research, education and invocation for the treatment of complex bowel disorders to improve the lives of those suffering with these problems, to improve diagnostic techniques, improve surgical and non-surgical management and improve pre and post operative care and disease management. Better understanding means better management which in the future could mean that radical surgeries like James had may no longer be necessary.

Both of these charities have made and will continue to make a real difference to James and others with complex bowel conditions. Neither of them receive government funding and their great work relies on peoples generosity so any donation, however small will be greatly appreciated! Any donations will be split equally between the 2 charities.

So why a marathon? To push myself right outside of my comfort zone. For James, a good day with Chron’s was “just” being uncomfortable. Most days were painful. Since his surgery he is improving day by day but like many people who have had an ilieostomy/colostomy, James's activity levels have significantly reduced. He used to run 10k easily but now hasn't run for over a year. Getting back into activity takes time, confidence and suitable guidance which is another aspect of Colostmy UK’s support.

Long distance running was never my thing but the discomfort (and some pain) is worth it for these great causes.

I completed the Richmond Marathon on September but suffered with severe for a large part of it so I definitely experienced some of that discomfort. Instead of stopping there, I have decided to give it another go. I’ve been out training even harder this time and I am hoping to be more resilient and improve my finish time this time around.

My physio brain has been shouting not to do it but the heart of a brother has been willing me on.

Hopefully one day (assuming I get through this marathon unscathed), James and I will run a marathon together!

If you would like to know more about the charities you can link to their sites here:

https://www.colostomyuk.org/

https://www.stmarkshospitalfoundation.org.uk/