Better Understanding: Ulcerative Colitis (Inflammatory Bowel Disease) in Ultimate

Interviewer/Editor: hazard

Let's start with introductions. Who are you, and who do you play for? 

I'm Ryan Harris. I play for and founded Purple Cobras

Other than founding Purple Cobras, what is your proudest moment in Ultimate?

On-field I would say coming second at Mixed Beach Nationals just gone, in Cobras second outing at Mixed Beach Nationals.

Off-field I would say all of the players that we have recruited and how well they're all doing, for example this year we couldn't enter Mixed Indoor nationals because too many of our women were picked by GB in this cycle.

Ryan making a grab at Sunburn. His stoma guard can be seen on his stomach.
Photo Credit: Andy Moss for the ShowGame

How/When did you start playing Ultimate?

I play ultimate at Brunel University because I lost a bet. My brother was the captain/coach of Birmingham University and one of his friends from school happened to go to Brunel. He challenged me to a game of pool and if I lost I had to go to training and if I won I'd get £20. I rattled the black and lost and I then went to Skunks that weekend and won my first frisbee tournament. I was hooked from that moment on. I knew how to throw before I went to university but started officially in September 2010.

How/When did you find out you had Ulcerative Colitis (UC)? 

I was diagnosed just after I started playing ultimate in April of my first season but I had symptoms since December. I was loosely diagnosed on sports tour at Lloret de Mar in Barcelona as I passed out and hadn't been drinking due to loss of blood, and they had a strong inkling that I had Ulcerative Colitis as back in the UK they had repeatedly falsely told me I had IBS (Irritable Bowel Syndrome). I insisted on a colonoscopy as they had advised me to do in Barcelona and was then told I had severe UC by the doctors in the UK

In layperson's terms, what is Ulcerative Colitis?

Ulcerative Colitis is a chronic condition that causes inflammation and ulceration of the inner lining of the rectum and large intestine, ulcers develop on the surface of the lining and these can bleed profusely and produce mucus. In particular if you are not in remission and having a flare up.

Is that similar to Crohn's disease?

There is a fair amount of overlap between the two as they're both forms of IBD (Inflammatory Bowel Disease). The main differentiation is that with UC the whole intestine can be inflamed but that is only the inner lining whereas with Crohns it can occur in all layers of the bowel walls. My UC became so severe that I ended up requiring surgery and having my large intestine removed.

Is there any sort of treatment or cure to UC?

There are treatments, I ended up having all of them at some point or another. As I am from the Bedford area I started by having the drugs Pentasa and Azathioprine but this proved to be ineffective, and there were no other alternatives for me in that area of the country. I met a lady who had Colitis from the placement office at Brunel and she told me about St Marks which is a specialist Colitis and Crohn's hospital in Northwick Park and I managed to get a referral due to my Brunel Postcode and was then entitled to other more expensive treatments such as Infleximab which is an infusion that you are given every 8 weeks and Humira which was a self injection treatment.

In terms of cure there isn't a cure currently - though extensive funding is going into finding one. The only way to truly "cure" it is to have the surgeries I had. This can now be done in two surgeries (though originally this was three). The first surgery involves taking your large intestine out and forming an internal pouch from your small intestine and leaving you with a stoma. The second surgery involves testing the pouch for leakages and fully connecting your pouch internally. This was all done via keyhole surgery at St Marks.

What effect did both UC and the treatment have on your ability to play in an Ultimate team?

With UC I found things very difficult from when my symptoms first appeared in December before I was first diagnosed and that only worsened as I had severe anaemia and chronic fatigue. I really struggled and decided I would find a niche role for myself as a result which is why I became an endzone player as this required less fitness and I was able to focus on my catching ability, movement and jumping.

The treatment helped my condition but had other ramifications as I was on medicinal steroids for a long time which caused serious issues in my joints and the impact on my knees in particular is something I suffer from still today

The biggest thing with ultimate frisbee to be honest that I struggled from was the travelling as with UC you can need to go to the toilet 10-20 times a day and the urgency is severe. This caused me some serious issues and unfortunately accidents during both my travels and at certain tournaments before they became much better at having portable toilet facilities. I also had to starve myself at tournaments to try and get through it and avoid these complications

How close should the toilet facilities at a tournament venue be to the pitches, in your opinion?

No longer than 5 minutes maximum. I was once at a tournament on the furthest pitches and it was approximately a 10 minute walk back to the main clubhouse and the decision had been made to not provide a portable toilet due to cost. There was approximately 4 people at the tournament (that I know of) who had UC who all found it very difficult to cope. I will add this was not a UKU event

Is there anything else tournament directors need to consider for people with UC (or other IBD conditions) when they are planning a tournament?

I would say at the bigger events portable toilets are a must, giving players a pass that can allow them to bypass what can be substantial queues at tournaments for the toilet would also take a large amount of stress away from people who suffer from colitis/crohns. Due to it being a very embarrassing condition at times I am quietly confident there are more players with colitis who simply suffer in silence.

According to chronesandcolitis.org.uk, there's around 146,000 people in the UK (1 in 420) with UC, so I'm fairly sure it's a decent part of our community.

I am trying to raise awareness of colitis in frisbee currently and form a team for a tournament made up of players who suffer from IBD called "Look at your Dump" so if anyone is interested in playing on this team with me and raising more awareness in the ultimate community please get in touch.

What actions can someone take to support a teammate with UC?

Be understanding if you can see they're struggling, accommodate them the best you can as they will have certain food triggers that can make their condition worse which can be different for each individual person.

I have always been very fortunate with my teammates with my condition that they've all been extremely understanding and accommodated me to the best of their ability constantly and when driving me always checked on me and asked if I ever needed a service station stop.

There are times I have felt extremely unwell and needed to be admitted to hospital at short notice and had to miss a tournament. No one feels worse about missing tournaments and letting my teammates down than I do. If anyone on your team suffers from UC or Crohn's, please be understanding of these situations and reassure them both that you understand and your health comes first.

Are the food triggers unique for each person? Or are they always the same/similar?

There is a certain amount of overlap as fibre tends to have a very detrimental effect which is why I didn't eat fruit and vegetables prior to my surgery and even now I'm advised to have very limited quantities whereas I know other people who struggle with spicy food or milk for example.

The food triggers do tend to be unique to each individual person and there is no known way of knowing what will affect you. I kept a food diary and tracked what made me worse in order to form my diet long term.

Are there any questions you'd prefer teammates not ask you about? Or are there any you wish they'd ask you about but they don't due to awkwardness?

I have always been very open with my teammates about my condition and always explained everything in full to at least 2-3 members of the team so they knew what to do in case something happened to me as I had a period where I passed out at tournaments due to my anaemia.

What advice would you give to someone diagnosed with UC, or something similar?

Always speak to someone close to you and not be embarrassed as there are many people in the same situation and your close friends will always be understanding and supportive and it will feel as though a large weight has been lifted and to go on some of the colitis forums and seek advice as it makes you feel better knowing that you aren't alone and that you can still live your life to the fullest.

Any final words/anything I've missed?

Since I have had my J pouch my health has improved no end and has changed my life for the better. I would also like to thank everyone in the frisbee community who has always been supportive. During my most difficult times with my condition when I was in a dark place the people in the frisbee community were my rock and helped give me the strength to keep going.

If you are interested in joining Ryan's team to raise awareness of Colitis in the UK, you can contact him by email: ryan.d.harris1991@gmail.com

Links to extra resources:

https://www.crohnsandcolitis.org.uk/
https://en.wikipedia.org/wiki/Ulcerative_colitis
https://www.nhs.uk/conditions/ulcerative-colitis/