February 2016

February, boy has it been a turbulent one, on the health front.

For the past couple of bleary months, I’d been expecting my treatment plan to fail. I was looking at a last chance saloon with Vedolizumab as soon as I started it way back in October, but to have it official fail on February 5th was abit of a shock. It meant I had to kick my butt into gear and get something else sorted. Which had to be something I had yet to try, something outside the realms of conventional medical therapy. I should have known it would mean experimental drugs or even trials. And of course, surgery.

Luckily, my consultant was organised enough to find me a second opinion on medical treatment and even get me a surgical consult in January; so I could get all the information I could and make an informed choice in a timely manner. But even at these appointments, I wasn’t given all the information I *needed* and I still have to go back to both – it’s like being drip fed when all I wanted was the grand, dramatic rush of it all so I could get sorted, so I could get better. That’s understandable right?

So I’ve been to another hospital to see a specialist gastroenterologist and I’ve seen a surgeon at my own hospital and it all came down to needing some more tests. This is a scope so we know the details of how much rectal involvement I have with my disease as it stands; determining if surgery is the best path to take at this moment in time. That is happening in a weeks’ time. That feels like it’s been in the “to do” pile for so much longer than 4 weeks. I’ve got that to look forward to. And I really am, because as much as it is a pain in the arse – metaphorical and physically – I want to get moving forward with things.

Last week I decided on having surgery, regardless of the outcome of this scope. I need to get back to a normal life and I am willing to ‘compromise’ and have a major abdominal surgery to achieve this. By no way is this an easy decision to make nor was it made lightly; it has taken a lot of sleepless nights, and I’m sure there are many more nights like that yet to come. The big unknown is the need for an end ileostomy. That is the big life changing part; surgery will be temporary pain and the scars will fade in time but a permanent bag will not go away. I will have to make it my friend and accept it. And I know how much it took to accept my disease in the early stages, let alone all the changes that have happened since being diagnosed almost 5 years ago.

In the mist of all these positive decisions, one big thing ‘helped’ me formulate and focus my thoughts; I lost my job.

I was gutted at the time. I was also angry, shocked, confused and let down by it all. But it does seem like a blessing in disguise. I just hope I have made the right decisions in the wake of it. Being unemployed and without money and some sort of focus in my daily life – except writing on this platform – is hard. It’s knocked me about abit and I know returning to work will be hard but I need to think of the strength I need to gather to get through everything else that is going to happen this year.

I don’t feel brave yet. I know I haven’t even gotten started with this whole adventure of surgery – and yes, that is what I am going to be calling it because I am determined to not become negative about this situation; a big surgery could quite easily get me down and upset and reflective on how crappy my life is or will be – but I do feel I am going to need to dig deep and find some resourcefulness. The same resourcefulness I had when I lived abroad, when I stayed in hospital for weeks on end, when I left home for university, for all those new and scary tests and experiences I had to undertake on my own… it somehow feels like my whole journey has been leading to this. And I need to gather strength and energy.

Maybe just being here and wanting to share my feelings, my story is bravery in itself. Maybe that is strength too; continuing on when it could be so easy to just… give in to feeling bleak. I’m not sure. Its certainly something to think about in the coming months.

 

So what have I got to look forward to?

  • Scope on the 8th March – three days of preparation beforehand, including my Moviprep schedule, then lovely drugs and hopefully some results on what surgery I need. That’ll be a couple of my steps of “Operation: Colon Removal” ticked off!
  • Results from said scope; they will no doubt take biopsies and everything.
  • A mini break with the boyfriend the weekend after.
  • Hopefully returning to work; in what role, I’m unsure of but I hope to be doing something by the time next month ends.
  • Maybe a second surgical consult? But thinking here is that maybe it’ll be April due to Easter falling early and upcoming Junior Doctor strikes.

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Day Twenty Seven – Titles

If you wrote a book about your life, your community, your condition, or your Health Activism – what would you title it? Come up with 5 working titles. What about your biography? BUTT OUT – THE ULTIMATE GUIDE TO DEAL WITH IGNORANT AND UNEDUCATED QUERIES ABOUT IBD / INVISIBLE ILLNESS. Too much? Too sarcastic? I feel as if not enough has happened to me to warrant a book about my life, my condition. And if there isn’t enough books related to Crohns and how to manage it, what works with your diet, etc. But I do get alot of questions about the invisablity 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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Day Eighteen – “I take it back..”

Write about a time that you lashed out at someone close to you because of frustration / fear / anger resulting from your health condition and you wish you could take it back. Forgive yourself and let it go. On the flip side, write about a time that someone said something to you that they wished they could take back. Did you forgive them? Why or why not? In last year’s HAWMC I wrote candidly about acceptance and Crohn’s Disease. Most of the posts reflected my feelings towards anxiety and fear in being accepted once again because of this invisible […]

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Day Five – Aspiration

“If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible? What’s your one, three, or five year plan for your Health Activism? My goals used to be small: blog. That was mainly focused on sharing my thoughts about issues that would come up in my life surrounding my Crohn’s Disease. I’m sure like most Crohnies, sharing the stories that make us fume – IBD being compared to IBS, a lack of education with employers or friends, etc – helps. And […]

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Day Four – Sharing Resources

  Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self advocacy! Anyone who can say that this is an easy post is clearly silly. Finding resources online when you first get diagnoised or find out the complexities of your conditon is easy. Finding good, honest and open sites that show both good and bad sides of your condition, ones that create postivity in the depth of the worst health moments, […]

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Day Two – Introductions

Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism? Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help the newly diagnosed. Hi, My name is Louise. I have Crohn’s Disease. I’ve not had it for all that long but it feels like forever, because every week, every day, there is potentially something new that is going on or going wrong. Trying to catch up wit this bitch is hard hard work. It is exhausting. I have what is called […]

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Day One – Getting Started

Why you write – tell us a little bit about why you write about your health online and what got you started. Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran? When I first started write in the end of 2011 I was just venting my frustrations and trying to find some peace of mind for all the crap that Crohn’s Disease was unfairly throwing my way. After partcipating in last years HAWMC I found solice in sharing […]

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Day Twenty Nine – Six Sentence Story

Six Sentence Story. In this day of micro-blogging – brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences. Check out some at http://sixsentences.blogspot.com/ What am I suppose to do? she wonders, as she stares at the table, fighting tears. “I’m falling to pieces, falling apart at the seams” she tells him. Every breath hurts her chest, her heart; she feels everything. It never meant to get this far, go all this way without a conversation about the elephant in the room.Her mind swims with regret; […]

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Day Four – I Write about My Health Because…

I write about my health because… Reflect on why you write about your health for 15-20 minutes without stopping. I write simply because I enjoy writing. Alot happened to me in a relatively short space of time. I spend most of my hospital time in a isolation bed thinking far too much, wondering about everything and anything. I went through many emotions and I had hardly anyone to talk to. I felt alone. I felt completely and utterly destroyed by the news of Crohn’s. I wondered if I was the only one. I know now, that I am just one […]

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