Let’s Be OstoMATES- Mark’s Story

Mark's Story

I met Mark at the Purple Wings Charity Ball back in July through Jasmine of Jasmine Stacey Collection and Laura who wrote travelling abroad post (they modelled under the creative eye of Jasmine for White Rose Clothing) I had been following Mark on his travels around Thailand and the like on his page Travels With A Bag but just didn’t realise the connection until the next morning. So I will hand it over to as I have said before the devilishly handsome Mark.

I grew up just outside a small village, just outside a small mining town, just outside Derby. My parents are middle class, university educated teachers who are not “from round ‘ere”. As for me, I sometimes wonder if I’m a little bit autistic; I love maths, I can’t help but think logically, and I don’t think I’m good with people. Often I just don’t get them. I can’t figure out how to solve the people puzzle like I can solve a good maths puzzle.

So, after a very normal and lovely childhood, I entered a secondary school where I felt different; socially awkward, ‘posher’, friendless, but more intelligent and more eager to learn than anyone else. Even the geek clique didn’t really accept me, as I wasn’t really into playing tabletop battle games. I wanted to be normal and accepted, but I wasn’t willing to sacrifice my strength of being academically successful. I was also pushed hard by my parents; it seemed that no matter how well I did in school, they always focused on the critical part of the feedback that the teachers gave at parents evening. I felt like I should always do better!

I started to ‘work people out’ and be more socially skilled around the age of 16 and even went on a lads’ holiday to Lanzarote in the summer holidays after GCSE’s. At that tender age, like all teenage boys, my main goal was to lose my virginity, but this seemed like a completely impossible pipe dream, as the geek/loner vibe followed me into 6th form and made me feel very insecure and unattractive. Then, just before another lads’ holiday to Falaraki in October 2001, my stomach started to get a little dodgy. What is weird is, unlike the diarrhoea I got the year before, when I told my mum and she went and bought me some loperamide, this time I was too embarrassed to tell my mum.

After two months of watery stools in the morning, and having to ‘hold on’ and not drink much water all day because I didn’t like the toilets in school, I developed a rash and finally felt like that was a good enough justification to ask my mum to make a doctor’s appointment. The rash was a superficial cover to go ask about my diarrhoea. He gave me some IBS medication – fibre mixed with some kind of medicine – and that cleared up all the problems over Christmas. All was good.

Except two weeks later the diarrhoea was back with a vengeance. I had to go much more often than before and it was darker, a bit like it might have something dark red in it, blood maybe? This was even more embarrassing than normal diarrhoea, I definitely couldn’t tell anyone now! Three more months went by and I started to lose weight and I looked sicker and sicker. It all came to a head when I got back from a German exchange trip. I looked very pale. My mum was worried. We went to the doctor and got a blood test. I was very anaemic. In hospital one of the registration questions – how often do you open your bowels? – gave my mum a clue as to what was going on. Thankfully I now told the nurse the truth. ‘Why the bloody hell didn’t you say anything?’ My mum probably thought, but she didn’t really admonish me at that point – what difference did it make now?

Over the next few months – 3 separate incarcerations at the Derby Royal Infirmary – they pumped me back up with someone else’s blood, pumped me full of corticosteroids and pumped all the poo out of me again so they could do all kinds of uncomfortable tests. IBD was the diagnosis; they didn’t know if it was UC or Crohn’s but the barium x-ray confirmed there was a stricture in my terminal ileum so it must be Crohn’s. At one point they threatened me with surgery to remove my colon and I cried; I didn’t want to lose any bits of me at that stage of my life. But thankfully when they started me on Azathioprine things seemed to calm down and I was out of hospital for over a year. I went to Leeds festival, I held down a job and I met a girl! Then I decided to go to Africa on my gap year… In Mozambique I started to feel a little unwell. Not as bad as the guy who got malaria, but not great. About a week later in South Africa, I said to my tour guide that I needed to go to hospital; now I was in a bad way.

After that – all the way through Uni and into my first job – I had ‘steroid dependent disease’; it was only Prednisolone that kept me roughly on the straight and narrow. The Azathioprine didn’t work anymore, Cyclosporine was ruled out, methotrexate did nothing, Infliximab worked for about two months and made me feel like a superhero, but then stopped working, Adalimumab didn’t seem to help at all. I was now 23 and it was looking like surgery was the only option to get my life back. Despite the health problems, there was one beautiful, blonde positive in my life; I had met the most amazing girl in the world. And, here’s the best bit, she liked… me!

My first surgery, sub-total colectomy with resection, was just after Christmas and was f***ing horrific; I was scared, I had a tough time in recovery (I was cold, so so cold), so much pain, the nurses were completely overworked and didn’t have time to help, my IBDN came to visit but I was in so much pain I couldn’t actually talk. It was difficult for me, but it was also tough for my girlfriend, I would hate to see the person I loved having such a hard time. So when the diarrhoea came back just a few months later I was mortified. For me, two surgeries in two years highlighted to the world just how broken, weak and messed up I was, so, for example, I didn’t want my parents to tell any of my family that I was going for a second surgery, much less have everyone know that I was going to be pooping into a bag from a bit of intestine poking out of my stomach.

My girlfriend helped me keep this big secret for the next 6 years, supporting me emotionally, helping to wash the sheets when it leaked, carrying a change kit in her handbag and getting TP from the ladies’ when there was none in the men’s. As well as all this, she agreed to marry me in 2014… until in 2016 she left me, asked for a divorce and changed my world. I now needed to find support elsewhere, change my own sheets when it leaked, make sure to have a change kit in my pocket and get my own TP. My biggest fear was that I would need to tell certain girls who entered my life about the bag on my stomach before I got naked, and I had no idea how to do this! As it turned out, I was quite lucky that the first new girl to see it was a nurse and knew exactly what it was and was super easy going about it.

Four months after she moved out, I got the feeling that I needed to get away, to face my fears – of being alone, of coping with my disability, of meeting new people – and decided that I should quit my job and go to Thailand. After all, a friend of mine had been when he broke up with his girlfriend, and I was told by many, many people that it was easy to travel there; everyone spoke English, lots of other people are travelling on their own, and it’s easy to meet other travellers. I didn’t let my ileostomy get in the way of scuba diving, Muay Thai kickboxing, rock climbing, trekking and generally enjoying life!

Don’t get me wrong, travelling and some other activities are not easy when you have an ostomy – see my own blog for some stories and helpful hints on travelling. But I have come to believe that it is great to get out of your comfort zone, face head on the things that you find difficult or uncomfortable, and come to the realisation that your disability doesn’t have to stop you from living life. It is much better to push through moments of discomfort and fear, than to live with the continuous fear that you might not be able to handle the challenges that life throws. I now believe that I can be charming and charismatic, that people can love me even if I am a geek and even if I do have a disability, and that I can handle any challenges that life throws my way.

Mark is living proof that regardless of your stoma you can still enjoy your life and backpacking (he travelled extra light)  is possible you just have to plan a wee bit beforehand. Thank you Mark for sharing your story!