An interview by Dr Sunni
Jack truly brings the ‘mate’ in ‘ostomate’. An all-round upbeat and engaging man about town, Jack is a quantity surveyor working in London, living and enjoying life to the full where he can, and has also embraced a plant-based lifestyle during lockdown.
Dr Sunni: Jack, what has your journey with IBD been like and what you have learnt along the way?
Jack: My IBD journey started when I was diagnosed with UC in 1998 at the age of 5. It all came about so quickly in a short amount of time with heavy bleeding, sever weight loss and other debilitating symptoms.
Medications kept me in remission for 5 years and let me grow up healthy and active until I was getting into my pre-teens. Around 2005, my severe symptoms returned, this time much more extreme that before.
I had to be referred to Birmingham Children’s Hospital to get an emergency ileostomy after several transfusions and infusions didn’t work. After a long recovery, the stoma let me continue with life for another 5 years before being offered the chance of a J Pouch surgery to reverse the stoma – which would allow me the chance to pursue some of my life milestones easier; dating, going to college and learning to drive.
The J Pouch allowed me some fantastic 6 years where I managed to travel and work abroad in a few countries as Barcelona, Kuala Lumpur, and lived in Australia for two years. It was only after that I was unfortunately suffering from pouchitis which made me return to the UK to explore what could be done – with the recommendation to go back to a stoma bag.
I decided to delay the surgery and try a course of antibiotics which became life changing for me. The relieved my symptoms and I felt like a new man – feeling strong, motivated and so couldn’t commit to going back to a stoma bag. I felt happy living on antibiotics and despite suffering with recurring bouts of pouchitis, I delayed surgery as ling as I could.
I was involved in different trials, cycled antibiotics and changed my diet – anything to make me believe that I could delay the inevitable. I used work as an excuse to not go back to a stoma bag as I was working on making a name of myself in the City and didn’t want to take unnecessary time off.
The stress of managing it all came to an end when I couldn’t take the severe symptoms any longer and recall keeling over in pain and crying on the floors of at the disabled toilets at work and decided to go back to a stoma. Since, it has been amazing and in March 2020 I agreed to having the ‘barbie butt surgery’.
So, to sum up my journey, I want to quote something I read which said “a chronic illness is not about pretending to be ill, it's about pretending to be well”. I had been doing that year and suffering in silence to pass off as being well because I didn’t want IBD to define who I was nor stop me from doing what I want to do.
Dr Sunni: What would you tell your younger self, knowing what you know now, about IBD?
Jack: IBD in general can be quite deceptive. We can forget what normal and healthy feels like and what it means to be healthy. I say deceptive because with medications you can feel good and think that you are healthy because you are pain and symptom free. So, I would say it important to not lose sight of what being healthy truly means.
I would also tell myself to not get blinkered by medication and delay surgery when it is required.
Dr Sunni: What inspires you to keep fighting daily?
Jack: My first inspiration couldn’t go without mentioning – my wonderful partner. She considers herself part of the IBD community and has embraced it fully. She communicates with fellow IBD warriors and has also made sure we are both eating well rounded meals. Since transitioning to a more plant-based diet, we have enjoyed the variety of tastes, flavours and textures and feel all the better for it.
Secondly, it must be the IBD community. When I had a stoma at the age of 11, I was the only student at school to have one, and at work today I am the only person to have a stoma. Having never met another person knowing what I was going through during my hard time made it a lonely place. Social media has allowed us all to connect and its fantastic to see and share experiences, whether it about surgery or like Dish Dash Deets - sharing information which can help to manage symptoms or help to make you feel better about yourself from a nutrition and well-being perspective.
Dr Sunni: How do you deal with food and gut health?
Jack: Firstly, I have to say I absolutely love the Dish Dash Deets website, and have appreciated the different articles, colourful photos and recipes, with the Indian chickpea curry and beetroot salad as stand outs for me!
I have committed to becoming more plant-based with at least 5 meals a week being whole food plant based. I still rely on eggs and milk as one of my regular sources of protein.
As I have got older and gone through my journey with surgery, I have started appreciating the link between the gut, the mind and food. With the gut accounting for around 70% of the body’s immunity it is important to look after it as much as possible.
As an ostomate, I also must be consciously aware of what I am eating but also my salt intake with a sprinkle of salt on most of dishes, except my morning cereal of course!
Though I haven’t adopted a full plant-based diet, I try to eat as much healthy food and nutrients as I can, except for the odd weekend drinks. I have recently been enjoying adding more legumes like black beans, chickpeas and kidney beans to my diet.
Dr Sunni: What would you advise others with IBD?
Jack: Make sure you are confident with the information that you are getting from your doctors and if you feel you aren’t getting all the answers, then seek them out by getting a secondary opinion. Use the experts that you have an opportunity to seek the advice of to build the confidence to make an informed, empowered and right decision for you.
Also, make sure to not keep suffering for too long such that you keep on struggling for the sake of it. When I hear and see those with IBD suffer health-wise but also from social exclusion and that constant feeling of being defined by out toilet habits it makes me think about whether it was worth cycling medication to committing to surgery earlier.
IBD can haunt you. I've always ignored it and done everything I wanted in life, but it always seemed to drag me back down to the square one and raise me up to manageable highs when I was in remission.
You can feel great with IBD, you will be able leave the house without needing the toilet, you can be outgoing and feel amazing again, but you need the right medication and care to get there with the patience of time.
"Expect the ups and downs with IBD, and with the turbulence you will get there"
- Jack Hodges