Alex is the founder of ethical travel case company OneNine5. This is the first time he is talking about his journey with Crohn’s Disease.
You can find a little treat and links/instagram pages at the bottom of this interview!
When were you diagnosed with Crohn’s?
It was 2003, I was 14 years old and I spent the best part of 12 months feeling more unwell, losing weight and going through test after test until they finally diagnosed me.
When you’re young, you don’t really comprehend the long-term implications. As a sport obsessed teenager, I remember an overriding sense of frustration that I was too tired to be out playing football with mates. One the advice of my doctors, I spent six weeks on a polymeric diet and drank 9 or 10 Ensure Plus a day to give my bowel a rest, in the hope that the inflammation would calm down. Explaining to a bunch of 15-year olds that I could only consume ‘chocolate milkshakes’, boiled sweets, iced lollies and chewing gum encouraged a lot of attention and questions.
But the Polymeric diet didn’t do the trick and from the age of 14-17, I tried numerous different medications and diets to try and get my Crohn’s Disease under control. However, it didn’t work until I started taking Azathioprine and I felt like my Crohn’s Disease was in remission…but it always felt like I was walking a tightrope. Nevertheless, I’d developed the mentality that Crohn’s Disease wasn’t going to define me or stop me from what I perceived to be ‘normal’. So, I carried on through the latter years of my teens, into sixth form and through university.
Throughout this period, I didn’t want to talk about my Crohn’s Disease, think about it or consider myself as having a chronic illness. I’d heard about this thing called a stoma but, in my mind, – I only had mild Crohn’s Disease and that was for people who were really ill…I didn’t feel like I needed to worry about it.
That was until 2009, when I had a real scare whilst I was back with family at Christmas during my second year of university. I woke up in the early hours of Christmas morning in serious pain and toughed it out for 4 days before I finally gave in and ended up in A&E. I had a large abdominal abscess and was hours away from bowel surgery, before a strong dosage of IV antibiotics seemed to work their magic over the new year.
Looking back now, this was probably the beginning of where it started to go wrong for me! The fear of stomas and surgery firmly buried my head in the sand and I carried on as ‘normal’ throughout my remaining two years of university; before moving to London in 2011 to work in the corporate world of IT. During this time, I’d eat what I want, drink what I want and loved to travel around the world. But throughout this period couldn’t shake the odd niggle of pain and the signs of a mini flareup; which usually resulted in a week or two on steroids. Alongside this, I had one other strange symptom and would find that I had periods where I’d need to pee frequently and it was painful. With my head still firmly buried, I put this down to drinking one too many Jägerbombs the night before.
Whilst the typical symptoms you’d expect from having Crohn’s Disease weren’t troubling me, by 2017 I was referred to a urologist because the frequency and pain when peeing was getting worse and worse. I was incredibly fortunate to have private health cover at the time with my employer and was able to go through all the usual test you don’t want to do when you’re a 28-year-old male. Prostate checks, cystoscopies and countless blood tests. There were strong signs of a niggling infection but after ultrasounds, CT scans and finally an MRI scan – I was told that part of my small bowel had adhered to my bladder and a small fistula had formed between bowel and bladder.
By this point I felt truly horrendous, my body felt weak and my days of burying my head were over. I was admitted to see Prof Omar Faiz who worked between Harley Street and St Mark’s Hospital. November 2017, I was now forced to face-up to my biggest fear…surgery and stomas!
What was your experience with a temporary ileostomy?
A decision was made and I was warned that I had major bowel surgery impending. Whilst I was still under the care of Prof Faiz at Harley Street in London, the surgery would take place at St Mark’s Hospital. Beyond the surgery I was strongly advised that a temporary ileostomy would be necessary to enable my body the time to heal and this thought turned my world upside down.
I wasn’t mentally ready for this, but was now forced to face as a reality. My Dad spent over 40 years in healthcare and told me – matter of fact – what to expect. The whole thing scared the hell out of me and I felt an overwhelming sense of anger; that’d I’d pulled the short straw.
I’ve always struggled with the concept of illness and wrongly, I’ve perceived it as a weakness. With even my closest friends, I couldn’t bring myself to tell them about the surgery I was about to face and totally played down the severity of it. Even with my housemate, I wasn’t able to communicate the impending surgery and risk.
I spent the first of my three weeks in hospital on TPU (Total Parental Nutrition). So whilst I was asleep at night, A nasogastric tube was topping me up with an additional 500 calories a day to try and get my body into the physical state required for big surgery.
I went down to theatre on a Sunday morning; feeling scared and staring at an ‘X’ that had been penned on the right side of my abdomen, where they would create the opening for my temporary ileostomy. Even at this point, I was still determined to grasp onto some sense of control and humility. I argued with nurses and porters to let me walk down to theatre rather than wheeling me in a bed, because there was nothing wrong with my legs! I had a spinal block (similar to an epidural for women during labour), a load of anaesthetic and I was out.
When I woke up, I was seriously groggy. My only memory was chewing on a large piece of rubber and struggling to breathe. When I finally came around, I was staring at a clock on the wall that told me it was 8.50. There were wires everywhere accompanied by a chorus of steady bleeps and alarms. A nurse with a friendly face was making notes at the bottom of my bed on a large piece of graph paper.
I was in surgery for seven hours and during that time, my body was struggling to cope with the physical pressure it was under. All the while, a colorectal surgeon, urologist and army of nurses tried to undo the years of damage to my bowel and bladder that I’d caused from my stubbornness. During the surgery my body went into something called Systemic Inflammatory Response Syndrome (SIRS). My pulse was racing at over 200bpm, whilst my blood pressure was dropping rapidly. For context, the anaesthetist informed my parents that it was putting my heart under the same strain that you’d expect from running two marathons back-to-back. Whilst the surgery was a success, this response during surgery meant I was moved to Intensive Care Unit and ventilated as the medical team battled to regain control of my body’s reaction.
My poor mum and dad tell me it was the worst night of their lives as they sat by my bedside and hoped that I’d be strong enough to pull through. Whilst I’ve got zero recollection of anything that happened that evening, they took some comfort that I had some fight left in me when my dad informed me (a passionate Man United fan) that Man City had beaten Liverpool to end their unbeaten record and I gave them a fist bump in a comatose state.
Once I’d fully regained consciousness, the six month recovery was about the begin. I spent a further two nights on ICU, which was a lonely place. You don’t get much sleep on ICU and I had plenty of time to try and make sense of everything I’d been through, followed by everything that was to come.
For anyone that’s been through major surgery, you have to accept that your dignity is being left at the hospital door. It’s a humbling experience to pass through and one that I think I can take positives from today. I was looking down at my body; staring at a maze of wires and bags. There was a stoma bag for my newly formed ileostomy, a catheter, a tube and bag for a wound drain, a tube into my wrist and hooked up to morphine, a nasogastric tube and finally a central line; which was sticking out of my neck and ran directly into an artery by my heart; serving as my only source of nutrition for the next seven days.
Even in that physical state, I wasn’t truly accepting of the ileostomy and resented the stoma nurse in those first few days I was back on the ward and recovering. I thought she was bossy and fussy. By the time I was discharged we had a great relationship and I came to realise that she was brilliant at what she did… She realised she was dealing with a stubborn patient that needed a bit of real talk to get me in the right mindset.
By that second week of recovery in hospital my bowel had kicked into action again and I was able to introduce solid food back into my diet and I did this with vengeance. With a bit of tough love from my Dad, I was out of bed and gingerly plodding up and down the ward with my drip stand in tow. My mindset changed from fear and trepidation, to one of resilience and determination. I still struggled with the idea of truly opening up to mates about what I’d been through and my recovery. I proactively tried to encourage friends not to visit me because I looked pretty rough. Two of my oldest mates Dan and Alec came to visit and I’ll never forget the look on Dan’s face when he saw me. Because I’d played down the severity of the surgery, he turned paler than I was when he saw me.
Two weeks post-surgery and armed with this weird small bag attached to me, along with an arsenal of bags, spray, wipes and powders – I was discharged and heading from North-West London back to my parent’s home in a small Lancashire town.
From that point, I embarked on a military-like schedule of non-stop eating and consistently drinking St Mark’s Hospitals ‘e-mix’ to help me stay hydrated whilst my large bowel was out of action. It’s the most bizarre of diets to go fibre free and basically eat anything that’s typically unhealthy but after months of feeling so weak, my body welcomed all the calories. Some days, I was eating upwards of 4000 calories a day.
As I started to feel stronger and adapted to life with the temporary ileostomy, my mind turned to the plans post recovery. Against medical advice, I’d set myself the target of 3-4 months to get fit and well, so I was back in hospital to have the temporary ileostomy reversed at the end of May 2018.
I didn’t want to spend all my time playing on the Xbox or watching Netflix so one day I pondered, had I not survived the surgery, what would be my regrets in life and I rounded on three things:
- I’d never launched or run my own business
- I’d never been in love
- I’d never seen England win the World Cup
Has Crohn’s changed you? Did it change your perception of body image?
I think the surgery and the last two years have changed me more than the previous 15 years of having Crohn’s Disease, because it’s something that I allow myself to analyse and make sense of now. During those first 15 years, it was an aspect of my life that was compartmentalised. Today, I’m more open about it with others and don’t perceive having Crohn’s Disease as a weakness. Equally, I’m a firm believer that it doesn’t define me and my life choices.
In terms of mindset – it’s cliché but a near death experience really does provide a whole new perspective on life. When I reflect on how unwell I was and the complications during surgery, whatever else I face, I genuinely don’t think I’ll feel as scared or as low as early-2018. I take huge positives from this now and I feel so mentally resolute and strong.
Physically, I’m not embarrassed or worried by the scars from the surgery. My only slight regret is that I didn’t get into a better routine/ habit of applying Bio Oil to them post-surgery. The scar from my temporary ileostomy isn’t the neatest, but I’m cool with it.
I have the best relationship with food these days – I eat what I want and have a huge appetite. My ability to fully absorb food/ nutrients is certainly impacted by losing 80cm of small intestine so I eat upwards of 3000 calories a day to maintain weight. If I wanted to put weight on, I’d probably need to spend all my time and money on cooking food, so I’m content with my body and don’t feel any big pressure that I need to conform with the male stereotype of hitting the gym and ‘bulking’.
The only aspect that frustrates me – I still have a low Hb and need 3 monthly B12 injections/ Iron Infusions. I’d like to get fit again but when I take on strenuous exercise my heart rate can hit between 180-200bpm and I’m cautious of this.
How has the online community helped you? What makes it so impactful/important to your journey?
My introduction into the online IBD/ ostomy community wasn’t something I’d planned but I’m really thankful that Sinead Mullen got in touch via our OneNine5 Instagram account and we got talking about carrying Ostomy products with our Eco-Conscious Wash Bags. Before this, I wasn’t aware of the community that existed on Instagram.
Given my own inability for 15 years to accept and acknowledge that I had Crohn’s Disease, I never sought to connect with others in the IBD community. It’s something my mum had encouraged on numerous occasions and I vehemently objected.
After getting to know Billie, following others online and more recently watching Bryony Hopkins piece for the BBC, I’ve got the upmost respect and admiration for people who can openly talk about this across their social channels. I can see how supportive it can be when things are scary and uncertain.
This is thee first time you’ve spoken about your Crohn’s disease publicly, how come it has taken you until now to speak about it?
Like I’d mentioned, I wrongly perceived illness as a weakness and I’ve never been the type of person that wants sympathy. With that mindset, I just kept it to myself; only my family and close friends really knew I had Crohn’s Disease. There’s been times over the years when I’ve felt and looked horrendous but I’m stubborn and fairly resilient, so I’d still drag myself out of bed and carry on. If anybody asked me, I’d never be honest and tell them I felt truly dreadful. In doing so, there was the positive that life carried on for me and up until January 2018, Crohn’s Disease really hadn’t impacted my life too much. I went through school, university, into a career and travelled a load.
The obvious negative in all this, when you continually deny something you get to a point where you don’t bend, you break and that’s how it felt for me in 2018. Through my lack of acceptance and self-care, I’m sure I made a bad situation, a lot worse by the time I required surgery.
Through surgery, I’ve been forced to face-up to something I’d previously denied and I’m now a lot more accepting and sensible to manage the disease better and look after myself. For the first time in my life, I’m proactive going for things like blood tests and outpatients appoints with the Gastro team to ensure all’s good.
Talk to me about OneNine5 – why did you start the company?
It was a combination of circumstance and passion. My experience during surgery was the strongest of reminders that if you’ve got a passion or goal in life – don’t put it off, go out there and chase it. So With the three regrets I’d pondered during recovery from bowel surgery, I wanted to set about making ‘regret #1’ happen.
The second aspect that inspired OneNine5 was sparked during my recovery in 2018. After watching Blue Planet II and hearing from the great man, Sir David Attenborough in 2017 – I decided to educate myself about the impact plastic was having on our planet. I began to read more online from journalists like Lucy Siegle and ocean advocates like Emily Penn and this was a lightbulb moment to make a positive difference, escape the corporate world and build a business with environmental sustainability at the heart of it. The idea to design eco-conscious travel goods wasn’t the immediate idea but I had a gut feel that it was the right thing to do.
I love to travel and visit a new country and I’ve never let Crohn’s Disease deter me from going off-the-beaten track to discover some amazing places. The third aspect resulted from my personal experiences of packing and travel. I had countless conversations with friends and family to make sense of their experience too. There was an overriding frustration when packing and carrying cosmetics/ toiletries through airports – packing liquids into those single-use plastic bags. From here the idea of the Eco-conscious Wash Bag was born. I obsessed over existing products already out there and analysed EVERY aspect of every wash bag that ASOS, John Lewis, Selfridges, House of Fraser & Debenhams sold. After that, I set about redesigning the wash bag with the style and functionality that represented the modern traveller.
How do you manage a chronic condition and running a business? Do you have any tips for someone who might be worried about this?
From my experience, running your own business offers a load more flexibility compared to my career working in the tech industry – I don’t have a manager expecting me to be in an office or checking in for a meeting at a specific time. I don’t need to worry about booking a days annual leave or asking for an afternoon for a hospital appointment. There’s times post-surgery when my Hb has dropped and I’ve needed to spend the day in hospital for a blood transfusions and iron infusion. As long as I’ve got my laptop and wifi – the hospital ward is my co-working space for the day!
Open communication with the team you work alongside is essential. If I feel like crap, I’ll try to take some time out to just switch off and give myself a rest.
Why is the environment so important to you?
At OneNine5, one of our core values is all about being real. We try to avoid the online culture whereby people support a cause in order to monetise that opportunity. We’re only on this planet for a finite amount of time and want to make a positive difference whilst we are here. The actions of the human race have reduced the amount of biodiversity on this planet, reduced the population of wild animals and supported big corporations who prioritise profit before the planet. I’ve seen first-hand how human interference is causing coral reef bleaching in Australia. The second, I’d mentioned previously, from my own researching during recovery and being shocked by the evidence.
When we created OneNine5, one of our strong views was that every business should take responsibility for their own goods with a closed loop recycling system. Contributing and funding the infrastructure required to recycle their own goods in their domestic countries (because otherwise you shouldn’t be allowed to produce a product). We love Surfers Against Sewage who are actively calling out brands who are more bothered about their yearly bonuses and profit margins than doing the right thing by funding a radical change. We vowed never to do this.
Put simply if we continue, our planet is on a one-way street to disaster and we’ve seen through catastrophes like COVID-19, the acceleration of melting on the Antarctic ice cap and the deforestation of the Amazon rainforest – there’s a huge imbalance. Humans have a far greater impact on the environment than any other species. We have the power to change this but funding and education are needed swing this pendulum back in the right direction and we want to be part of this change.
You can follow OneNine5 on Instagram and view the website here
(PS you can also use my code BILLIE15 for 15% off!)