Sunday; the night before

Feeling nervous about tomorrow’s appointment at the surgical clinic.

Want to have it all booked and sorted so I know what I’m working towards this Summer but really dreaded it finally being in black and white.

***

I know this is the best option right now. In fact, it’s sort of my only option right now. I’ve failed everything else, and even though the combination of biological drugs have made my colon better in the past twelve months, my terminal ileum is a mess. And it needs to come out so I can move forward; in so many ways!

With the diseased portion of bowel out, I can finally return to work. I can look at low toxic drugs to help maintain my remission once I have it (fingers crossed) and I can look towards a future not dominated by IBD. And that I am really looking forward to.

The pain and stress of getting to this surgery has been a barrage of appointments and procedures on top of months and months of waiting around. And I won’t lie; the time it’s taken to get to just this point has been mentally draining; all the whilst still feeling well below par. Knowing I have to pace myself and really think about when to take a break is tough, even now after four years of having Crohn’s.

So I go back and forth between feeling free and happy about surgery but then suddenly feeling “holy cow how did we get to this already?” Then I realise I’ve realistically known about surgery being my next option since the end of last year. And yes, surgery might not happen for a couple months but there is no getting out of this, there is no going around it. I have to have it in order to get back to being me. Getting back to being at well again. Getting back back to life. Getting back to being at work.

It might only be a “limited bowel resection” but I am hoping it is a step towards that elusive goal of remission. And I know surgery is a small part of that goal.

So every time I panic abit and get scared about being cut open and having bowel removed, I need to remember:

THIS WILL MAKE ME STRONGER.

Pulling me apart will make me stronger.

Physically pulling my guts out will make me stronger, because Crohn’s has already made me realise my strength elsewhere. This is just another piece.

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World IBD Day

As this ordinary Monday comes to a close to many, I sit here going into the final few GMT hours of World IBD 2014 with some unrest. Should I show them? No one has seen these before, I’ve not allowed myself to bear these photos to other humans, not even other IBDers.. what am I scared of? What am I afraid of, apprehensive about? Why not be brave and share you, Louise? Yes, I even full first named myself, that’s how much of an indecision this is. But, I want to show people what IBD can do to you, of […]

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#GetYourBellyOut

It is always great to see a social media campaign get a startling, yet thoroughly deserved coverage and support sorely needed for IBD. Campaigns for IBD here in the UK haven’t always kicked off the way those behind or supporting it have wanted. There is some professional jealousy, as to why IBD still does hasn’t achieved the publicity and awareness it is currently lacking. This campaign though, #GetYourBellyOut follows in the footsteps of Cancer Research’s #NoMakeUpSelfie from March 2014 – in which females posted make up free pictures of themselves and nominated female friends to join in spreading awareness of […]

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Day Twenty Two – Day-to-Day

Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism. Write about the things you couldn’t live without – list 10 things you need or love most. I’m not sure about anyone else, but I felt – and some times, still do – feel incredibly lonely ‘suffering’ with my Crohn’s. It as if once I get a hold on things, some thing comes along and knocks me sideward and upset the balance. And its taken, and does take, alot of strength to remain in control and keep the balance tipped slightly in my favour. That undeniable, […]

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It’s finally time..

.. to raise some funds and some eyebrows. I’ve always been abit confused as to why people fundraised for charities. Alot of people did it whilst I was at school and university and I was always too busy with studying to get down and into it. As with everything else in my life, Crohn’s has changed many aspects of it and has forced me to change my ways in so many respects. For the past year, as I battled my way into remission and subsequently out of it in the New Year, I became restless. I needed something new to […]

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“… The best you can”

I find myself relating this more and more. In the start of Crohn’s and this “adventure”, I thought I was going to be one of those patients / sufferers that was always honest about everything. But I soon learned a very important personal lesson. It is simply exhasuting doing that. Put simply, life gets in the way of being honest. Not everyone wants to know the details of your life, be it whether or not you’re in pain. Constantly being asked if you’re okay is frustrating and very irritating. So you start to just say that dreaded word “fine” and […]

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This is what you do. If you feel low, you stand tall. You mess up, you move on. You want to try something, try it, and if it was a stupid thing to try, you look it in the eye. There’s no turning back. You apologize if you’re sorry, but know that the nimblest, strongest hands can’t rebuild a bridge out of embers, so cut new wood. Start from scratch. You love with your whole heart. If you’re jealous, talk yourself from the ledge. If you can’t talk yourself down from the ledge, have a good time up there, looking […]

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“There are no accidents”

This seems very cut and dry doesn’t it? That the control you have over your life is everything in the world, no one else controls the destiny of your life but YOU. Many will look at that and think “why, yes, I agree” and most of the time I am with them, nodding in agreement. Until it comes to my Crohn’s. If you apply this to discovering you have a chronic illness like Crohn’s or UC you cant help but sometimes go to your dark place and contemplate the reasons as to why you’ve got this disease. Of why all […]

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You changed my life without even trying, and I don’t think I could ever tell you how much you mean to me. I can’t imagine what things would be like if I hadn’t met you. (via anditslove) This is something I would love to say to Bernie. My Crohn’s might be the thorn in my side some days, but I am learning to try and be grateful for the pain and joy it brings me. Yes, my Crohn’s brings me joy! I wouldn’t be who I am without my Crohns. Lots of people have come and gone in my life […]

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My honesty will be the death of me. Or maybe it won’t. It is true for everyone – and even more poignant for people who suffer with a chronic, long term illness – that you need a strong support network around you. Know how you get into mine? You stick by me through the bad times. The good times, they come around again eventually, but the test of your character – and of mine, but that’s another story – is how you help me when I’m at my worst. What do you say, what do you do when I am […]

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My current diary is almost at its end. Its been an eventful 12 months. I’ve got four more weeks of pages left to fill; my work hours, meetings, counselling, Brownies sessions and dates. I flicked through it last night whilst angry and I found myself laughing at times.Being pulled back into its grasp. All of my big medical problems were written down in that diary. I keep all of my diaries. I’ve had one every year since I started university back in 2006. I find it both odd and comforting to look over them. This year’s one is abit more […]

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I’ve spent alot of the last couple days thinking about the past. Destructive, I know! I’ve been looking through old pictures, reading old notes, going over periods in my life when I was both happy and sad. I’ve remembered alot of things I’ve kept hidden for a very long time. These thoughts have come about because I have a friend coming over from Canada to stay with me in a couple weeks time, and I’ve got to face her, as who I am right now, not who I was the last time I saw her. It was just over three years ago […]

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