Pulling myself apart

Slowly but surely I am getting there.

It’s the eve of my scope prep starting and I am hungry.

I keep thinking this is the last time I will do a colonoscopy because I might not have a colon in a couple months.

And boy is that surreal.

I keep pulling myself between feeling super-duper positive about things and how I am happy this is finally happening after all the shit I’ve had to endure this last year – both with my medical decisions, the jobs I’ve lost, the plans and promises I’ve had to take back or break –  then back to feeling incredibly bad that I’m “not that sick” to need a surgery to make me better. And it’s not even a resection, its removal of the colon and formation of an ileostomy! It’s not other people telling me I’m not sick enough or that I am a fraud, it’s me. Just when everything is considered, I was hoping I would be sicker when they removed it, so that it would really make the biggest difference. But I now know planning a surgery is more complicated than just knowing what procedure is needed. And I am sick. It’s just hard to believe that I am unable to work – the one thing that levelled the playing field between me and those without IBD – all because my colon won’t behave and I feel guilty for that happening.

I couldn’t have changed the path my disease has taken. I tried all the medication they advised could work but in the end it just wasn’t enough. I don’t know what will happen after they remove the colon. I don’t even know if it will help, I just hope it does. I hope the creation of an end ileostomy spells the end for the majority of my IBD problems, not the start of new ones.

It does mark a new chapter.

It’s a new adventure for me.

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I’ve never had any surgery before. And my first one will be major abdominal surgery.

It will be life changing not only for me but everyone who is close to me.

I have to make sure…

Well, I can’t make anything sure. I don’t know how diseased my rectum is and that is the tipping point for which surgery. It is doubtful they will find nothing. I just hope in the end I can really come to terms with having a permanent ileostomy. That is my major hurdle. Physically, emotionally, mentally.

I wonder what it’ll be like to have it. On my belly, for the rest of my life.

Rest of my life. That is a long time.

Would I feel any different if it was going to be a temporary situation? I doubt I would.

Would I take a temporary one over a permanent one, if offered?

I wonder about how it would feel to sit in my favourite chair at home, watching TV, whilst gently pooing. Or whilst out shopping. Or whilst at work. Or driving. I am a little more curious than anything. I don’t know if this is healthy, to wonder about it so much? I have too much time to consider it all. I wonder how I will feel if they decide not to do one, if I am building myself up for something that may not happen? Wil this be on Tuesday? Will I know enough by the end of my scope to know I will have one?

I just know I have no medications I can try now; I need to have surgery to gain back a somewhat normal life. Even if that means a big lifestyle change. That seems like a price I should be willing to pay to compromise. I hope I’m not waiting forever to get into see the surgeon again or even to have it done; whatever it may be at this point.

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