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.

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.