I'm Maria and I am a Health Coach. I have lived with my own chronic condition for fifteen years - this gives me a unique insight into supporting people to meet their health goals when managing their own health issues.
Here is my IBD story.
I was diagnosed with Inflammatory Bowel Disease fifteen years ago.
People often wonder why and how you get IBD? The NHS state that it is not clear what causes IBD, but it happens when your immune system attacks your bowel – causing it to get inflamed. It is also unclear why this happens.
Some studies have considered that it may be due to genetics, a problem with the immune system, smoking, a stomach bug, food poisoning or an abnormal balance of gut bacteria.
Other studies have made links between psychological stress and IBD.
A quick search of PubMed or Google scholar would bring up thousands of different studies that you can read though.
I often try to pin point what triggered my IBD, when I look back to when I started experiencing symptoms, there are a combination of factors that wouldn't have helped.
I had a terrible diet;
A history of disordered eating, and
I was going through a really stressful time.
I had split with a long-term partner and found myself living in my sisters back bedroom, I was supporting someone I cared for very much through a difficult time - who then broke my heart.
So, when I started bleeding every time, I went to the loo I naturally though that I was dying!
I wasn’t dying. I had Inflammatory Bowel Disease, something I had never heard of.
My initial symptoms were blood in my stools every time I used the toilet. I also had pain when eating, but nothing else at that time.
Happy Birthday to Me...
I saw my GP who referred me to a gastroenterologist. It didn’t take long for me to get my diagnosis (I have heard stories of it taking years for some people to be diagnosed, and as a result their condition worsening). It was my 30th birthday and I was first hospitalised for the condition and put on IV steroids.
At the time it was believed that I had Ulcerative Colitis – a form of IBD, that I would have to live with for the rest of my life, that I would likely have surgeries and be on medication forever.
I remember being completely overwhelmed and terrified. I'd never heard of this disease and now here I was being told I had it and it would never go away.
For the first few years following my diagnosis I buried my head deep in the sand and pretended it wasn’t happening. I continued to live my life and made no changes at all to try to improve my health or condition. If I could go back now, I would do things so differently in those early days – which could have meant that my condition would not have progressed to where I find myself today.
I worked in Public Health at the time, I had a Masters Degree in the subject and worked to improve other peoples health everyday. But I still didn’t make the connection between how I lived, and the way I treated, and took care of my body.
For me one of the biggest barriers in accepting and learning how to live with my condition was the lack of information available for patients at the time. The information given to me by the IBD team was limited – a brief leaflet on IBD and instructions on how to take my meds, not of any real value at all. I didn’t even know what this disease was, people don’t generally like to talk about poo, so it wasn’t something that I ever heard anyone talking about.
My initial diagnosis was Ulcerative Colitis, this has recently been updated to fistulizing Crohn’s disease, and it is every bit as horrible as it sounds. I've had surgeries dues to abscesses and fistulas over the past few years and am currently living with a seton stitch.
Since my diagnosis I’ve been on many different medications both oral and intravenous, I’ve also had several surgeries, at one point I was so ill that I was considering a stoma bag as we had exhausted other options at that time.
I had reached a point where I couldn’t take my children to school without having an accident. If I had to be somewhere early in the morning, I wouldn’t eat the night before. I would take Imodium before bed, then wake up an hour earlier than I needed to, to take more. Thinking about it now is heartbreaking. At the time you just get on with it, but the thought of going back to being that poorly is terrifying to me.
It didn’t come to that.
My symptoms are currently being treated with Infliximab. I have infusions every eight weeks, and I’m responding well to it.
Becoming a Health Coach
Over the past few years, I have started to take my health more seriously. I’ve moved away from the mindset of being a patient, I’ve taken responsibility for my own health and continue to research and experiment what works best for me and my body. I focus specifically on my diet and nutrition looking at different ways to optimise them, exploring how I can make myself feel as good as possible. And it's working.
I decided to become a Certified Health Coach to support people to improve their health and wellbeing. I wanted to find a way to share my experiences with others who maybe suffering in the same way I did. I want to be able to share the information that I have gathered over the years and support people to consider their own health and how they can make practical and sustainable changes that will benefit them, as well as demystifying some of the health messages that we hear.
The difference that I have seen in my overall health by being more intentional has changed my life. Being on my own health journey had me realise how isolating and scary it can be. For me, IBD is the kind of disease that people don’t talk about, because who wants to talk about pooing themselves! No one. It’s embarrassing, you feel dirty and helpless. The impact that having this condition has had on my mental health over the years is immeasurable and I’m not sure how I would have got through it without the support of my family. With many other chronic conditions people will have similar feelings around shame, and not feeling good enough.
Things have changed a lot since I was first diagnosed, with the sad passing of Dame Deborah James from bowel cancer, Strictly Come Dancing’ Amy Dowden talking about her Crohn’s diagnosis and Ryland Clark sharing his mums battle with the same disease, these people have raised awareness of the condition, and talking about it is now less taboo than it was. In addition to this is the ongoing work of the charity Crohn’s & Colitis UK.
There is still a long way to go, and so many people are left overwhelmed every day following their diagnosis. Crohn’s & Colitis UK estimate that everyday 66 people are diagnosed in the UK. That’s 66 people potentially in a similar position to me fifteen years ago.
I hope to be able to support people who are newly diagnosed with IBD, or those who have been living with the condition for a while, to better understand what that means for them daily. As a Health Coach in this field, I offer practical support to create health goals, and change certain health behaviours to live healthier lives, and to feel that you have control over your disease and body.
Being diagnosed with a chronic condition can feel like a death sentence, but it’s not. You can work with your body to live a healthy life. For me, it was the beginning of the end, the end of abusing my body, and the beginning of my journey to being healthier.
Thank you for reading my story.
Maria x
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