Ultra Running With Ulcerative Colitis
Today is the anniversary of my 120 km Cappadocia Ultra Trail race victory. One year ago, before the race, I wrote this post but didn’t share it since I was not sure whether it is too much information about my personal life. I read it again and had the courage of sharing it after one year.
One year ago I wrote this: “I don’t even know if the disease will allow me running next year. People may not be aware but it is the same for everyone. Life is full of good and bad surprises.”
I was planning to run even more challenging races in 2020 but because of another disease, Corona, all the race plans are canceled. I am happy that I pushed my limits last year and recorded all my races in my YouTube channel. I keep myself motivated by watching them now.
In this article, I will be talking shit. Literally. As an ultra trail runner who was diagnosed with Ulcerative Colitis in 2012, I would like to share my story. I have two purposes. One is for the warriors who have been dealing with inflammatory bowel diseases. I hope this article will give some positivism to their lives. Second is raising awareness of this disease for those who have never heard about it before.
I will be participating in Salomon Cappadocia Ultra Trail on 19th October 2019. One year ago, in the same event, I finished my first ultra trail marathon distance: 63 km. This year, I will be running in 119 km parkour. It might sound inhuman, and crazy but once you are in the world of trail runners, 119 km will sound normal. I am hoping to finish even longer distances in the next years as long as I am fit and healthy.
Being healthy is the key here. It is a fact that Ulcerative Colitis (UC) and Chrone’s Disease (CD) are lifelong diseases and cannot be cured. However, they can be controlled. Luckily I have been in the remission state since 2015. Nobody knows whether I will be in remission next year or not. All I can do is to avoid stress and keep on having the same healthy lifestyle. It has been working so far so good.
I participated in a running competition for the first time last spring, 2018. It was a half marathon. Then, in the same year, I ran a full marathon and an ultra-marathon. As you might notice, the jumps between race distances were quite big.
Usually, the ultra runners take the distances easy when they begin this sport. I was also recommended by experienced athletes to run the same, shorter parkour this year too. It wasn’t an easy decision but I don’t even know if the disease will allow me running next year.
People may not be aware but it is the same for everyone. Life is full of good and bad surprises. There is no guarantee of being alive even the next day. As a UC warrior, I know what it means not being able to do any sports, and being in places for a long time where there is no bathroom. I feel that I should enjoy this race with no fear, while I can.
What is Ulcerative Colitis?
This part is for the readers who have never heard about this sickness before. If you are already a warrior, you can skip to the next section. I am not going to mention anything you already don’t know.
Crohn’s disease (CD) and ulcerative colitis (UC) are chronic (lifelong) inflammatory diseases that affect the digestive system. Together, they are known as inflammatory bowel diseases (IBD). Crohn’s disease can affect any part of the gastrointestinal (GI) tract from the mouth to anus, while ulcerative colitis is associated with inflammation in the large intestine. [Ref]
The responsibility of our immune system is to defend us from infections. Ulcerative colitis is believed to happen when the immune system mistakenly attacks our own body. White cells are sent to fight tissues: the intestines for UC and the entire digestive system for CD.
The cause of IBD diseases is still a mystery. A combination of genetic factors and environmental factors plays a role together. In your genetic code, you might have this disease. It might be activated with intestinal bacterial infections and stress would make it even worse.
IBD does not affect the average life expectancy. However, during the flare-ups where the symptoms of the condition become worse, life quality is affected terribly.
The goal of the treatment is taking the disease under control which is known as the remission stage and to improve the life quality. The remission period can long for years, but even in that period symptoms might appear temporarily, especially in stressful times. The main enemy of a UC warrior is stress. The first step to beat this disease is removing stress from life in any condition.
My Ulcerative Colitis Journey
The story begins with moving from Turkey to Finland for a 2 years Master’s degree program. I had limited financial resources to be consumed between September and May. After that, the primary plan was finding a job or a paid internship program related to my studies.
April was the most difficult month. All of my job applications were rejected, the courses at the university were demanding, and I was feeling physically weak. I found myself in constant fighting and surviving mode all alone. Due to excessive stress, my body was reacting strangely, and I was constantly tired.
In Finland, The 1st of May is not just an ordinary Labor Day celebration. It is called Vappu — the biggest carnival event. It is the celebration for the arrival of spring. I will always remember the 2012 Vappu as a turning point in my life which I fell so deep and learned to stand up.
I was out at night with friends and partying. All of a sudden, I started to visit the bathroom every 5 mins. The next day, we were having a traditional Vappu picnic. Disappointment and stress were combined with physical tiredness. Then, I realized that something was wrong. The following days were even worse. Frequent and bloody bathroom visits were making my life very difficult. I was diagnosed with Ulcerative Colitis with clear symptoms.
This experience taught me the most important life lesson: the priority should always be health. We might have dreams that we try harder and harder to achieve. The question is whether it makes the victories even bigger or more meaningful when one suffers more, and end up with lifelong consequences. I believe not.
I survived, and roughly two months after the first flare-up, I found a paid internship position. Since that day, I have always avoided the challenges which might affect my health. My body also helps me by sending signals to the last 30 cm of my larger intestine when approaching to stress threshold.
UC Treatment
Depending on the severity of the UC, there are different treatment methods. It starts with anti-inflammatory drugs which is not a long-term solution but it decreases pain during the flares. The treatment is followed by relatively stronger medicines. When one strong medicine failed, an even stronger one was tried on me.
Faecal calprotectin level in a stool sample is used as an indicator of the UC severity. In a normal person, this level should be below 100. In the first days, this value was 1440 for me. From 2012 to 2015 I tried several strong medicines, and all failed. Meanwhile, my life quality was extremely poor. I was making literal shitty jokes out of tragic incidents. I was simply shitting my pants when I couldn’t find a bathroom. I had dates, business meetings, travels where I couldn’t hold myself anymore, and shitted my pants.
My life quality was getting so bad, and I was feeling so embarrassed that I convinced myself I had enough good and bad days, so death wouldn’t scare me. Talking with a special person in my life, who has always been supporting me just brought me back to life. In the end, I was convinced that life is an album where we constantly add pictures and turn the next page. There are so many empty pages that are waiting for new pictures.
In 2015, after failing the increased dose of Remicade medicine, which was the final solution at that time, doctors were suggesting to remove the large intestine with surgery. I was trying to gain as much time as possible to fight with the disease. After insisting more, the doctor mentioned one new medicine that had just gotten approval from the European Medicines Agency: Entyvio. I was told that the chance was low because the medicine had a 30% success rate on UC patients at that time. Whether the medicine works on me or not could be found out in three months.
After three doses of this new medicine, I was only waiting and hoping for good news from the doctor. There was nothing more left I could do. I believed I fought well. Then I received the call from the doctor in the morning. He gave me the good news! We were both very happy! I was almost crying and so was the doctor! He was also surprised because I was the first person in Finland that Entyvio worked!
In 2012 May, I was in deep shit (literally), and in 2015 summer I stood up. I was ready to keep this up for the rest of my life. Stress was the only enemy. I was eating and living healthy, and visiting the gym regularly. In the next year, I started to work in a sports company as a software developer which led to an even healthier lifestyle. I am not going to talk about how I started running in this article since I wrote a long one already right before my first ultra trail race (bit.ly/cut63k2018pre)
Between 2015 and 2018, I had an Entyvio infusion once every 2 months. This medicine is normally very expensive. Thanks to the social welfare and healthcare system in Finland, it wasn’t a problem. In summer 2018, the doctor mentioned that we could try stopping the infusions since I had been in remission for a long time. It is a known fact that stopping this kind of treatment during remission would lead the body to develop antibodies. This is bad because in case the symptoms start appearing again it would no longer work.
I was told that since Entyvio is new, there are not enough studies to prove whether the body would develop antibodies or not. There was a risk, and the decision was left to me. It wasn’t an easy one. I knew that medicine was heavy, and it was difficult to schedule infusions every two months. I said yes, I would stop it.
Knowing that stopping the Entyvio infusions might cause the symptoms again, I was in close control and giving frequent blood and stool samples. Psychologically, I was also paranoid. It was two months before my first ultra trail marathon when I stopped taking it. During the race week, the number of bathroom visits increased. I was worried until the start time. Once the race started, it went very smoothly. I remember that in 11 hours 30 minutes of active movement, I shitted it only once!
Still, it has been smooth without Entyvio for more than a year. No idea how long the remission will last, but I will be strong and if it starts again I will beat the shit out of Ulcerative Colitis once more!
How do I deal with shit during races?
Being in remission doesn’t mean that I don’t have any symptoms. In 2016 autumn, when my colleagues invited me for running, I was hesitant at first. I assumed a one-hour active movement would also mean bowel movement. Nevertheless, it went surprisingly well.
Here are some tips based on my 2 years of running experience with UC:
- Prefer trail running over road running. Simply because you can easily shit in nature. This is one of the reasons why I run ultra trail races rather than road marathons. When I am in nature, I see shitting is a very natural thing to do.
- Wake up early, very early before the race or training. I know this is too much information, but I warned you at the very beginning. I will talk shit! On the race or training days, I spent long quality time in the bathroom so that I feel comfortable during the activity. This has worked extremely well so far.
- Coffee helps to activate the bowel. Coffee as one of the best sources of caffeine activates the intestinal muscles and helps you to relax your bowel. However, one should be careful because it also makes you thirsty. When you are thirsty, you drink more water. As a result, you would have a constant urge to pee, while trying to avoid shit. I am talking from my experience of the Prague marathon :)
4. No need to stress! Right before every single race, I have always had anxiety and stress because of the shitting fear. However, after being an experienced runner, I learned that it is not a big deal. My only intention was to make sure that everything would go smoothly. I also learned that there will be no single race that everything will go smooth.
5. Just do it! In Turkish, we have a saying: ‘Hızlı giden atın boku seyrek düşer.’ which can be translated as ‘A fast-running horse shits rarely’. If you don’t let it shit, your body won’t be relaxed and you won’t be fast in the long run. Focusing only on the speed and neglecting other things will affect the overall performance. If you have to shit, just do it! Believe in me, you will feel fresh like you just started the race!
6. Consider what you eat on the race week! I travel to different countries for races. Tasting local food during travel is a natural behavior. However, eating different food than the usual diet is always risky. This is also a valid recommendation for even healthy people. We, UC warriors, need to be more careful than anyone since we never know how the bowel would welcome the food. Keep on carb loading until the race day for no surprises. Carb loading is the best!
7. Prepare yourself, but not too much — if it is trail race! Last year in my first ultra trail race, I spent so long time in the bathroom that I was almost late for the start. I had to run 2 km to the start line to be on time. Instead, I could have just left even my bowel had not been ready, and I could have easily shitted it during the race.
8. Prepare yourself, too much — if it is road race! Running road marathon is different than a trail marathon. While trail marathon is in nature, and you can take a shit break easily, in a road marathon, runners tend to break their personal bests by non-stop running. Furthermore, road marathons usually take place in big cities where there are more than ten thousand runners and even more spectators. It is much stressful to take a shit break during road marathons. Thus, extra care for the bowel in the mornings is always beneficial. In Prague marathon morning, we were having breakfast with fellow runners. I was surprised to see one of us was having coffee close to the starting time. In the end, my colleague had to stop 3 times for shitting, and I as a UC warrior I had no incident.
Conclusion
If you are a warrior and in a pessimist mood, I sincerely hope that my story from one year ago will help to cheer you up. I was once told that life is a photo album with pages waiting for victory and joyful photos. Here is one of my pages:
If you are not a warrior but have a friend around you who is a warrior, I hope my post would help you to understand the struggle your friend has. See the note below, and support him.
