Gutsy Humans: Interview with Scott Greaves and his Journey in Dealing with IBD

Scott, can you please give us a character description of who you are?

This is a good question. I feel, at 29 years old, I am still discovering who I am as a person. I used to think, growing up, that I knew exactly who I was. But really I had no idea. I believe, as we grow up, it is life events which ultimately shape our character and it is how we cope with these life events and our reactions to these life events, which allow us to gain a deeper understanding as to who we are as individuals and what our character is really like.

From a young age, I have always been exceptionally ambitious. I remember at school and University I always wanted to achieve. I was particularly hard on myself growing up as I didn’t want to be “good” at the academic classes I took or the physical activities I got involved in, I wanted to be “great.” Ultimately, I believe it was this quest to be a success, which lead me to pursue a career in law, which can, at times, be a very competitive profession with everyone striving to prove themselves to the organization they work for (and ultimately to themselves as well) and advance professionally as quickly as they can. For the avoidance of doubt, I don’t always think this is a good thing and as humans, we need to be kinder to both ourselves and to others. My diagnosis with Ulcerative Colitis has made me view life and my career quite differently now.

I’m also, I believe, very outgoing and enjoy spending time with my family and friends. However, at the same time, I can also be quite introverted and I enjoy spending time on my own and gathering my thoughts.

I like to think I’m a very understanding person and would hope that my family and friends feel they can confide in me and seek advice on anything that may be going on in their life. I think it’s good to always get someone else’s perspective on the inevitable life “issues” we face on a daily basis.

I also have a thirst for travel. I love to see different parts of the world (preferably those with a sunnier climate than the UK!) There is nothing better than waking up in a different part of the world and stepping out into a new city where you don’t know anyone and no one knows you – there is something so freeing and exhilarating about that!

What are the three things that you can’t live without, daily?

My family (including my dog, Oscar. He is a miniature Australian Labradoodle and the cutest little guy ever!), My iPhone (how bad is that?!) and, right now, my stoma bag, which I thank daily for saving my life!

You’ve been diagnosed with ulcerative colitis. Can you please tell us what the initial diagnosis was like? (Did you know much about UC, and how did you respond to this ‘new relationship’?)

I remember after experiencing the typical symptoms of IBD (increased number of bowel movements, blood in the stool, and severe stomach pains) going for a colonoscopy and being told that I have inflammatory bowel disease (“IBD”) and that they think it is Ulcerative Colitis (“UC”). My initial reaction was “what is this and how do we fix it?”. As a lawyer, I am conditioned to find solutions to problems and to find those solutions as quickly as possible with minimal interruption to the normal course of business. I thought, very wrongly, I could apply this logic to my health. I naively viewed my body as a “business” which I could find a solution for its disruptive behavior. I had never heard of IBD and UC and I presumed I’d just have to take a course of antibiotics and thereafter I would be fine. Even when my consultant told me this was a lifelong chronic condition I thought to myself “No, you’re wrong – you’ve made a mistake and this will go away. Watch. You’ll see. This will go away.” I remember thinking “this is not possible. I am healthy. I never get sick. This isn’t real.” I was completely in denial that I could possibly have a lifelong chronic illness. How is this possible? I don’t smoke, I drink in moderation, I go to the gym regularly and I eat healthily.

Therefore, I am healthy. My line of thinking was that only those who don’t look after their bodies get sick. How very wrong I was. And how very ignorant I clearly was too invisible conditions and disabilities. UC has definitely opened my eyes up to a whole host of invisible conditions and I have learned what suffering really is. Initially, I was angry. Angry at my body for doing this to me. I questioned what I had done to deserve this. But in typical lawyer style, I researched that this a random genetic condition of which I have no control over. No matter how much I changed my diet or my lifestyle (even though it was very healthy in the first place) I was still going to be at risk of a flare-up at any time.

I was diagnosed in March 2018 and initially, a course of steroid treatment worked. 99% of my symptoms disappeared. I thought that was me out of the woods and I would just have to take anti-inflammatory medication for a period of time until this condition went away forever. However, very shortly after finishing the course of steroids, my condition worsened and little did I know than in less than a year my colon would be removed in emergency surgery. Months before surgery I was going to the toilet 20+ times per day with blood and mucus pouring out of me and the strongest of biological drugs failed. My weight plummeted from a healthy 175 lbs to 126 lbs. However, no matter how many tears I cried and no matter how many times I told myself that this is not fair, nothing was going to change. These were the cruel cards life had dealt with me. I had no choice but to accept life taking me on a different path. A path that I had not planned to travel. A path that I did not want to travel. A path that terrified me. After surgery, my bowel then twisted. I needed further emergency surgery as this could have been fatal. I thought my time was up. How could the universe put me through this? I will never forget the feeling before this second surgery when I said “I love you” to my parents and fearing that that was the last time I’d see them. I woke up in high dependency with tubes coming out of every part of my body. It was in that moment of waking up that things changed. I saw the fragility of life. It’s true what they say; it’s only when something is taken from you that you realize how much it meant to you. I thought my life was going to be taken from me. But I woke up. I was so grateful in that moment.

Since March 2019 I have been living with a stoma and he’s my best friend because he saved my life. In the coming weeks, I am going in for further surgery to begin the journey of creating my J Pouch.  After that, I’ll be able to poop out my bum again! Sound simple? If only! Since last year, my focus has been to regain, my strength, weight, and life. All of which I have done and I am truly proud of myself. I have a greater appreciation for life now and a heightened sense of compassion. I used to think I had life figured out but I’ve learned that life isn’t easy or fair. However, life is a gift. Maybe some of us have to fight that bit harder for it. Or maybe I (and the thousands of others going through this or something similar) have been assigned this mountain to show others that it can be moved.

What was your support group like at the time? Were doctors, friends, and family helpful or was it a challenging transition?

I have been very fortunate to have a fantastic surgical and IBD team, all of which have supported me both in terms of my physical and mental health. I have a fantastic therapist who has also helped me navigate through this trying time. But importantly, I’ve been fortunate enough to have my family to hold my hand through the most terrifying phase of my life to date. And I am truly grateful for everything they have done for me.

I’ve also learned who my true friends are and I’m very lucky with the friends I currently have in my life right now. It’s true what they say, it’s during the toughest times of your life that you’ll get to see the true colors of the people who say they care about you!

What do you think triggered the oncoming of your ulcerative colitis, and what have you changed about your life to help manage the new diagnosis?

I question this daily. Research states that UC is caused by a combination of factors: the genes a person has inherited + an abnormal reaction to the immune system + something triggered in the environment.

I believe that the external environmental trigger for me was stress. To put It bluntly, I was working too hard and I forgot to be kind to myself and take a break now and then. I think we’re all guilty of getting caught up in the “rat race” of life and we forget that our bodies were not built for the pressure we put ourselves under, be it physical or mental or both.

I try now to keep stress to a minimum. I give my body the rest it deserves.

You work in a very fast-paced, demanding environment. How have you managed to maintain good health, as well as practice law at the same time?

Since my diagnosis, I have learned to slow down and say “no”. I don’t have to take every opportunity. I don’t have to go for a promotion at every opportunity. Sometimes it’s good to sit back and take in the view of where you are right now. I’ve learned to stop comparing my progress with others. We all need our own time to travel our own distance.

Do you feel as though UC has changed or challenged your identity and who you are? How have you overcome that in an industry where ego plays a huge role?

Being diagnosed with UC and the journey it has taken me on in terms of the surgeries I have had to undergo and the time I’ve had to take out from “life” to get myself back to health has definitely changed who I am. Or maybe it hasn’t – maybe it has introduced me to the person I really am. As I said earlier on, I’ve learned a lot about myself and life and this journey has given me the opportunity for a lot of self-reflection. I feel I’ve grown up more in these last two years than I have done in my entire life and for the first time, I’m finally learning to understand (and love) who I am and that is a great feeling. Before UC, I spent a lot of time being preoccupied with what is happening around me. I’ve now learned to spend my time paying attention to what is going on within me.

Many people feel victimized by this diagnosis. From someone who has taken a lot of control back of his own life, what advice would you give to those who are struggling with day-to-day life?

It’s okay to feel angry, to feel lost, to feel despair. Or whatever emotion you’re currently feeling following your diagnosis. That is perfectly normal. And you must allow yourself to feel all these emotions. There is no golden day that comes when these emotions just disappear. They come and go. Over time though, you’ll notice they don’t come over you as much as they used to. I still have days where I get frustrated, angry and upset at life dealing me the cards it has. However, I will not let this ruin my life. I refuse to let this condition define me or my dreams. Instead, I am taking the positives out of what has happened to me since my diagnosis: I’ve learned who I really am as a person. I’ve learned how strong I am. And I’ve learned what I want out of life. Some people go through life never realizing these things and, at 29, I’ve learned a lot – that is quite something in my opinion. I also believe this condition will be a constant reminder to keep myself grounded and not to get carried away with things that would previously consume me and to just enjoy life.

One of the hardest things to navigate is social life with UC. How have you managed to continue a social life, without feeling excluded because you can’t ‘drink as much anymore’? Any tips?  

I’ve found being entirely open about my condition with my family, friends, and colleagues as the best way to navigate through work and social life. Educating your peers as to what you’re going through will give them a greater understanding and if you need to go to the bathroom multiple times – they’ll know why. And if they aren’t supportive or understanding – they are not worth your time! I’m fortunate in the sense that I’ve never been a big drinker and I’ve never needed alcohol to “have fun”. So much so, I’ve decided to stop drinking alcohol entirely. I’ve not drunk for nearly two years! From the research I have done, once I have a J Pouch, alcohol can sometimes make you need to go to the toilet that bit more and to me, it is just not worth it. However, everybody is different and if you do enjoy a drink (and there is nothing wrong with that) speak to your IBD team as to what is the best alcoholic drinks to have and enjoy it in moderation.

On IG, you’re a huge advocate of quotes. What quote best sums up who you are, and how you live your life?

“Each player must accept the cards life deals him or her. But once they are in hand, he or she alone must decide how to play the cards in order to win the game.” – Voltaire

The above content is provided for informational and educational purposes only and is not a substitute for professional advice or diagnosis and should never be relied upon for specific medical advice. moxie shall not be liable for any claim, loss, or damage arising out of the use of, or reliance upon any content or information in this article.

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  • A wonderful, truthful, emotive interview from a truly remarkable young, brave, strong, loving man! So proud of you Scott! Life is too short and it is for living and enjoying! X

    • Scott has been a true inspiration to our community! We loved collaborating with him and having the opportunity to share his journey.