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13Mar

It has been almost eight years since I first started feeling unwell.
This was a something that niggled me at first but would go on to engulf my life at the ripe age of 22.
I’ve written about my diagnosis with Crohn’s Disease – a form of Inflammatory Bowel Disease; characterised as the long-term inflammation of the bowel, with extra intestinal manifestations in the eyes, joints, skin and bones – on numerous occasions, drawn upon it for some ‘inspiration’ on bleak days; but for the most part, that day remains as just DAY ONE.

Day One with a chronic illness.
Day One with an invisible illness.

 

 

So, what does ‘healthy’ after eight years of IBD look like?

We can see in purely mathematical approach – just look at the numbers:
Two surgeries
Six failed medications
One blood transfusion
Seventeen admissions
Countless cannulations
Ten specialists
Dozens of clinic appointments
Procedures – six scopes, thirteen MRIs, four CTs, dozen ultrasounds.
So many prescriptions for antibiotics, pain relief and stoma appliances.

Beyond numbers; my health, with a chronic illness, is a juggling act. It takes dedication, the kind that you grow into, fast. And it is hard sometimes, a real chore, a difficult task to remain positive in light of all this. But move past the medical anxiety and depression that can come with any chronic illness, recognising what you need to do in order to be – and stay – healthy is key.

I am still here. I’ve made it through all of the bad days, so far. I have made it through all the tough decisions, all the hard and complicated choices, through really overwhelming periods of time with IBD. I see that as my own measure of being ‘healthy’. Because when you have an illness that is chronic; being healthy, like you were before, doesn’t happen again.

Healthy becomes a ‘new normal’, something that you define for yourself.

And this isn’t just one thing.
For some it is being able to work again. To feel normal and just like everyone else in society.
For others, it can be returning to being active again, using exercise to maximise their efforts despite their disease.
For a few, it can be simply making it through the winter without catching a bug.
It could be making sure they take their medications, on time and every day without fail.
It could be getting out of bed and getting dressed.
It can be organising your repeat prescriptions or attending clinics.

Healthy is something that is so subjective and individual it looks different to everyone. No-one knows why IBD affects us all so differently. Why some people get lucky with medications working and others don’t. Why some come through surgeries without complications and others don’t. It doesn’t seem fair, but what in illness is fair?
Being healthy does sometimes feel like an impossible goal. But it is just that; a goal. An ideal. And it can mean whatever you want it to mean. You do you; you do what is necessary for you to feel well. For you to feel healthy. For you to be happy.

  

Louise Helen Hunt

Hi. My name is Louise and I have Crohn’s Disease. I was diagnosed in 2011 after a short period of time in hospital, but probably suffered in silence for many months before hand. Because of this, my disease never really went into remission. I’ve accepted and tried many different drugs and drug combinations in those first five years but in early 2016 my consultant admitted defeat and referred me to his top colorectal surgeon. I had a right hemicolectomy done in May 2016, which did not work. And after suffering in agony for 3 months, I returned to hospital that August for an emergency subtotal colectomy. I always knew that surgery was my last options whilst all the current medications kept failing for me. It seems I have some bad luck or just a bad ‘batch’ of Crohn’s. Luckily, that surgery saved me; my ileostomy has changed my life and changed me. In so many positive ways I didn’t even dare to consider when I was first diagnosed. My life with IBD is very different to that of what it was before. Whilst I would struggle with urgency, pain and medication side effects, having no colon has improved that aspect of my quality of life. But I have had to cope and learn to live with my stoma. For me, this has been challenging because I still have bouts of flare ups, despite being on a treatment plan for my Crohn’s disease. This month, I undergo my final surgery to make my stoma permanent. Something I am still wrapping my head around. Join me for insights in to IBD life, stoma adventures and the battles with anxiety and depression.

One Response to What is ‘healthy’ when you’re chronically ill?

  1. Thanks for your insightful first blog Louise, I am sure our members will find it just as helpful.

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