Ive Got Guts

We first met Seb some years ago when he was developing IBD Relief, and it became quickly apparent that we had a lot in common, particularly around patient involvement in research. Most recently Seb has contributed to our Cost of Crohn’s project, looking at how much time living with a chronic condition such as IBD costs patients and families. His website has become an important tool and network for those who suffer with IBD, so we knew that Seb would make a fantastic advocate for our campaign.

"I wanted to take part in the campaign to show that bowel conditions can affect anyone of any age and my not be visible to see."

Seb's story:

"The first symptoms of my colitis happened in 2008. It was the first time I noticed blood when I went to the toilet.

"I was 22 years old and taking photographs at a swimming meet in Reading for work and when I went to the toilet there it was - blood on the toilet paper. At the time I didn’t think anything of it. I didn’t realise that from then on my life was going to dramatically change. I just threw the paper into the bowl, flushed and carried on with my day.

"The blood continued for several days after I returned home to Brighton, and then I started experiencing bloody diarrhoea too.

"I went to my GP, was told I had haemorrhoids, given some cream and sent on my way. I felt the diagnosis was wrong so I didn’t use the cream and carried on for a few days hoping the diarrhoea would go away. But it didn’t. It got a lot worse.

"So, back to the doctor I went. This time a different doctor took me more seriously. I was given steroid enemas, a referral to a gastroenterologist for six weeks’ time and a blood test.

"By now I had started Googling and I was pretty sure I had ulcerative colitis and, as the days passed, my symptoms got worse and worse.

"I refused to let them get in the way. I’d played every match that season for my football team - Portslade Athletic - and it was the last two games of the season. I wasn’t going to miss them for anything.

"Before the first game I told my manager I might need to rush off into the bushes to go to the toilet, but not to sub me as I’d be back! I made it through the game but thought I was going to black out at one point.

Over the next few days I was really struggling. I was going to the toilet every half hour. I wasn’t eating or drinking because everything was just going through me and I had lost 10kgs in 2 weeks.

"I eventually ended up in A&E and was admitted to hospital.

"The moment the sigmoidoscopy pictures came up on screen I knew I had ulcerative colitis. I could see the inflammation - it looked just like the pictures I had seen on Google. My colon was in a bad way and I was told I may need emergency surgery.

"So many emotions came flooding out - relief that they had found what was wrong with me and that I was going to be looked after but also fear about the future. I’d read so many negative things about UC online. I didn’t think I would ever be able to enjoy any of the things I had before. Of course, I now know that’s not the case, but no one told me that at the time.

"In total I spent nine days in hospital. I was sent home with Pentasa and oral corticosteroids (Prednisolone) and an appointment to see a gastroenterologist. The gastroenterologist talked to me about what life with colitis would be like. He said I would probably not be able to exercise as much. Being active has always been a big part of my life - playing football, mountain biking, skiing, snowboarding - so this was a big blow.

"I was referred for a colonoscopy – and the result was severe pancolitis. No wonder I had been bleeding so badly, they said.

"After being back at home for a while, the diarrhoea and bleeding started to settle down. I tried to taper down my steroids but every time I went below 20mg my symptoms got worse and I had to increase the dose a bit more.

"In August 2008 Emily and I got together. At first I didn’t really talk to her about the effect my UC had on me. I made out that it was under control. We would go for creamy Italian dinners, cocktails in trendy bars, share a bottle of wine in front of a film. None of these were good for my colitis - but I still tried to hide it.

"By January 2009 my steroid ‘moon face’ was well established - as was an outrageous appetite (mostly for things that weren’t good for me!).

"March 4, 2011, was the second happiest day of my life (it was the first until my little boy was born!). Emily and I got married in an idyllic wedding in the French Alps. Just before the ceremony I did need to make a quick pit stop in a mountainside bar but thankfully I made it back in time and survived the rest of the day.

"By now I knew that stress (especially at work) was a huge trigger for making my symptoms worse and I had discovered some other things too. I avoided eating tomatoes, salad leaves, grapes - and anything else with tough skins and seeds. I also knew that alcohol wasn’t good for me. But, I still largely continued my life as it was. I had accepted this was how it was going to be.

"Then a life-changing moment happened. I’ve always enjoyed athletics, and watching the London 2012 Olympics reminded me of how much I missed it. I decided there and then to start training. I joined Brighton Athletics Club and found I was still pretty good. My times weren’t bad and there was lots of room for improvement.

"At the same time I also found my colitis symptoms started to improve - and not just the toilet-related ones. My muscles and joints were aching less and I had more energy. My mother is Finnish and as my times steadily improved I decided I wanted to try to run for Finland. But, to compete at a national level I would need to come off my steroid medication.

"In November 2012 I went to see an acupuncturist who said he could help. I have a science background and have never really been a believer in alternative medicine but my desire to get off the steroids was so great that I was willing to give anything a go.

"The treatment was incredibly relaxing and he also told me to stop eating gluten, dairy and nightshades. Again, I decided I had nothing to lose by trying it. I continued with the acupuncture treatments for a while and the diet seemed to be having an effect.

"In January 2013 I was able to come off the 6-Mercaptopurine and steroids (and haven’t been back on them since). In May that year I became Sussex Champion in 200m and 400m and in July I went on a mountain biking holiday to the French Alps.

"Sadly, I haven’t reached my goal of competing for Finland. Work and having a baby got in the way. But I’m still going to training (and I’m probably getting a bit old now anyway).

"Since then I’ve done a lot of research into why giving up gluten and dairy has worked for me. I also limit the amount of grains, sugar and processed food I eat, I don’t drink alcohol and try to only drink filtered water.

"I’ve also made a hundred or so other small changes to my life (such as practising mindfulness, having an air filter at home, using essential oils, taking a probiotic called Symprove, using a standing desk at work) which all play a part in helping me manage my colitis.

"Things that make me better are holidays, spa breaks, yoga and pilates, taking a proper lunch break, listening to music and certain foods (fish, chicken, most root veg, rice, most fruit).

"Things that make me worse are stress, worrying about finding a toilet,  disturbed sleep, antibiotics, tap water and certain foods (gluten, dairy, caffeine, sugar).

"I’ve recently made another addition to my ‘remedies’ list - spending time with my wife and my little boy Hayden, born in January 2015. Whenever I’m feeling stressed or sad or angry, spending just a few moments with him makes me feel great again.

Understanding your condition is key to living with it

"I still have some bad days but over the years I’ve learnt to manage my flares better and am incredibly strict with looking after myself when I feel like I’m heading towards a flare.

"In January 2016 I had a colonoscopy. It was the first one since my pancolitis diagnosis and I was incredibly nervous. Although I felt better and my symptoms had vastly improved I didn’t know what was going on inside me - and I was scared of what they might find.

"As the endoscope moved up my colon and reached the transverse bend there was nothing - no ulcers, no inflammation. I came away with a diagnosis of mild to moderate proctosigmoiditis. To say I was elated is an understatement.

"I can honestly say that I have never felt as good as I feel now (even before my colitis) but life can be unpredictable and I know this doesn’t mean that things won’t change in the future. Right now though, I’m just enjoying every day while I can."