Diagnosis: How I Feel Five Years On…

A casual Twitter conversation launched me right into this; right back to the moment when I was diagnosed with Crohn’s Disease:

How much from the day I was diagnosed with IBD do I remember?

I remember the fear. The unknown factor.

I remember the hospital trolley I lay on whilst I wanted for my scope.

I remember the pain I was in, the unbearable agony my stomach was giving me; that was no longer just the nerves of being in hospital, alone.

I remember the clinical setting, the clean smell of hospital and the idle chatter of the endoscopy nurses.

I remember the groggy feeling I felt once I came back into the real world from sedation; but the fuzzy memories of a scope being inside of my butt, in my colon: the uncomfortable coldness and the fullness. It was awful.

The words “Crohn’s Disease” came tumbling out of the nurse’s mouth and my eyes welled up.

It wasn’t through relief or even through shock it was through the realisation that this was now happening to me. I had spent my time at university watching my (then) boyfriend live with this exact same disease; it ruined so much for him, for us. I couldn’t deal with those emotions right then because I was being taken to a new ward for specialist treatment. I went with it, too stunned to ask why or what was happening. I put my trust and faith into what was going to happen.

***

That was Thursday September 7th 2011. It is almost five and a half years ago since that day and that diagnosis, yet going back there is still a very real and painful place for me. The pure emotion of it and the ones that surround that day are sometimes quite raw. But, overall, I look at my diagnosis with hope.

I’d been healthy until very close to that date. I didn’t suffer too much or have to fight to be seen by a specialist; I had food poisoning that lasted a month before I was taken to hospital. I’d lost almost 4 stone in that time, unable to eat and drink without being sick and developed a rash and painful lumps over my body. No one could really pin point my problem. But, I had been having bad bowels for months. I thought it was just a bad stomach sometimes, stress from work, drinking too much, not eating right.. it didn’t really bother me much. But, it was all relevant when we looked back in my first few weeks after being diagnosed.

Five years later, I’ve learnt to accept my disease for all that it is: in its nature it is unpredictable, non-discriminative, destroyer of good things. But I’ve learnt to live with it. I’ve learnt to be flexible and adapt to the situations and circumstances that crop up due to being chronically ill. From missing work to being unable to leave my bed, from seeing a new doctor every week to needing surgery; I hope I have taken all that Crohn’s Disease has thrown at me in my stride. Not always with a smile on my face, I have to admit.

Not that I could ever run away from the things Crohn’s has thrown at me.

After about three admissions, in quite quick succession; I had to find a way to cope with my illness. I started blogging. I joined Crohn’s and Colitis UK. I started talking openly about my bowels and what living chronically ill was like. I was young in my journey as well as in life, but I strived to be honest. I still do that. That pushed me through. You can’t escape the things that happen but you can find a positive way to get through them. You develop coping mechanisms and you find your own support network to help build and pull you up through dark times. You try to embrace the set backs, the disappointments, the failures in drugs and treatments, the constant appointments, the needles, the waiting; it all makes you stronger. Harder; better to fight for yourself with. Softer; better to empathise with others.

The strength I found I had inside of me, continued to grow as I became more informed and better at managing my condition; with the support of my IBD team and fundamentally the access to my IBD nurse. She was honest, efficient and effective. We gradually had a great patient / professional relationship built on honesty and trust. I could talk to her frankly when I was upset or frustrated and she could communicate my concerns to my ever busy consultant. But, eventually, the relationship with him became the same: we trusted each other. I didn’t over compensate, I let my body and symptoms tell him what was wrong. I trusted him to be honest about my options and what we were planning to do. With something that can be so unpredictable, he reassured me when I needed it. I admired him for that.

So, five years on, what have I learnt from having Crohn’s Disease?

1. I am capable of clenching my butt cheeks together, pretty damn hard.
2. I can multi-task: worry about my medication side effects, flare up symptoms and working full-time.
3. I know when to call it quits and hold my hands up.
4. I appreciate my good days because eventually a bad day will come around.
5. I rest when I can because it is important. Self care is fundamental.
6. I am stubborn and strong-willed and determined.
7. Those people who don’t appreciate their good health but moan about having a cold still annoy me.
8. I have found words and passions I never knew I had inside me before my diagnosis.
9. Life has completely changed for me; surgery changed my life.
10. The number of friends I have with illnesses out numbers those without. I love this fact.
11. Being in contact or finding something in common with another IBD patient or ostomate is a fantastic feeling.
12. I have never loved harder than I do right now; I appreciate it so much more.
13. My support network might be small but it is mighty.
14. My surgery improved my family life instead of changing it. The closeness and openness is just brilliant.
15. My commitment for educating myself is just love.
16. I wouldn’t want to be without my IBD or indeed now, my ostomy. They created me, the one who sits here and types.
17. I finally see my disadvantages as advantages.
18. I believe in myself, appreciate and value my worth.

But, if you take anything from my diagnosis and journey let it be this:

Please please please get checked out if your normal habits change and stay changed for a couple of weeks. If you notice blood, weight loss, fatigue, vomiting, diarrhoea – anything that looks and feels like a stomach bug but it lingers – please get it checked out.

Do not ignore a problem, because it doesn’t necessarily go away. Detection of this disease in an early stage makes it more manageable, then and in the long run. But be aware that despite it being incurable – at the moment – it is not a death sentence. I know wonderful and amazing people doing great things whilst living with IBD. They are testimony to how to survive with a chronic illness, throughout its ups and downs.