Day Twelve – Newly Diagnosed Advice

nhbpm-2012Today I am taking inspiration from the additional prompts list and writing about what advice I’d give to a newly diagnosed Crohn’s patient.

I remember the day I got diagnosed quite clearly in my head. It was September 7th and I’d just gone through my first flex sigmoidoscopy. I was told the crushing news that I did in fact have Crohn’s Disease and it was all in the latter part of my colon. It was severe and I would need to start treatment right away. I cried. Plain and simple, I broke down in front of the endoscopy nurse who had cleaned me up after the procedure. I was a mess. I didn’t realise then I would become more of a mess as time went on, and as I changed medications and had test after test, this would become something quite normal and familiar to me, I felt utterly alone and confused.

I had heard of Crohn’s before; my first proper boyfriend has it and it was difficult then just being part of his life back when we were together, but for it to happen to me, took me by surprise. I was healthy and fit and happy until I wasn’t any one of those things. I descended into the nightmare that was my first flare up within a couple days of first feeling ‘unwell’ and two months later I got my diagnosis; I didn’t feel the lengthy, drawn out process of fighting for a diagnosis as many other Crohnies I’ve spoken to have. I felt lucky, in retrospect.

I’ve only had it a year and its been a steep learning curve.

Stay positive.

Thats what I hope to achieve here, to let new Crohnies understand how important that is. I know that it is human nature and we can’t always be positive 100% of the time, and it is no doubt going to get so scary and annoying that you won’t always want to be positive about the bitch that becomes your IBD. But, along side humour, it helps. I’ve had many many dark days when things have become too much and they aren’t even IBD related, and I most definately get caught up in thinking I would have been so much better off now if I didn’t have it. If I didn’t have to change my lifestyle in order to avoid a flare up, or constantly take pills or be worried about faitgue and food and choices and making plans. It does restrict you, I won’t lie, but it does not make you any less of a great person. In fact, it probably makes you more awesome. We deal with so much shit – literally and metaphorically – but in no way, shape or form should that be how you see the world.

It does take alot to learn to live with Crohn’s. I’m still learning, as I’m sure everyone else is. Every day is different and its not always controllable how your Cronh’s does and will effect you. It can happen suddenly or it can happen gradually over time. Having a support network in order to help you stat postivie for longer is always good too. I have alot of Crohnie freinds and I always have my blog. I have my Twitter account and that is the most awesome therphy some days. Especially in those terrible days where you don’t know where to turn to for answers or help.

Talking. This goes a long way to help the positivity stay in your life. Speaking to people about my disease and becoming more comofrtable explaining the ins and outs of it – if you wish to, of course – helped me reach a place where I knew I could joke and make fun of my Crohn’s without people thinking I was weird or mad or just plain barmy. I know to some extend that humour masks the pain I go through, but it also helps me lighten the mood, on what can be quite a serious and terrible subject. But, it is my life; this is what I’ve gone through, going through, will continue to go through for the rest of my years, and I talk about it how I see fit.

I’ve had time to get used to it, and for the most part, I’m comfortable with my Crohn’s. I hope that new patients just let that comfortable stage come naturally, instead of forcing it. It will happen. It will.


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