The end of Biologics: Colorectal Referral – 12.01.16

I’ve had Crohn’s for almost four and a half years but this is the first time I’ve been anxious like this in a very long time. It’s certainly the first time I’ve come face to face with a surgeon. It was nerve wrecking. The judgment of my disease and the awkward chit chat my IBD nurse made whist he read my most recent scopes and scan results – MRI in November and scope in Sept 2013 (27 months ago) – felt like the longest ten minutes of my IBD life. Even more so than waiting to be called in for a scope or beginning to start a new infusion of medication or even meeting a new doctor.

So here’s the crack on what needs doing…

Considering the length of time it’s been since my last colonoscopy, he wants to repeat that before he decides my fate. Both in the need to have surgery and what surgery it would be. He did specify that if things were okay in the rectum he would like to perform a total colectomy. Shocking news; advising all of my colon, not just a resection of the worst of it, would need to be performed. Maybe because it’s been a long and slow decent into the crap that is now my current IBD state or maybe because it’s “easier” and has less risks, I’m not sure. I was just too shocked to say much other than “erm, okay?” in a shocked but polite manner. How I was keeping it together, I’m not even sure.

If my pesky rectum is anything other than disease free, I would need a different surgery. One would be a colectomy with a temporary bag and the other a colectomy with a permanent bag. That was scary. I’ve been trying to prepare myself mentally for what a surgeon would suggest and an ileostomy was something I am having the most difficulty with. I think it’s mostly due to the fact I don’t personally know anyone who has one to tell me more about it; partly because researching that specific part of a surgery / IBD feels too much like I’m expecting it to happen; it’s a possibility. In the mist of all my research, I’d overlooked the fact that in order to have recent imaging, I need a colonoscopy. They need to find out what my stupid rectum is like. They haven’t ever really mentioned my rectum before, and now it was all he was concerned about! It’s weird because my disease has never been in there, but it now could be. He said it was doubtful but he wanted to check, information was power and all that. Especially when you need to cut away someone’s colon.

I’m trying to be okay with all this talk of no colon and possibility of a bag for a while. But in actual fact, I’m rather worried about Vedo.

Why? What’s wrong with this wonderful new drug that was promised to ‘maybe-possibly-not quite sure’ bring some relief and hope?

Because I don’t feel any different. Because it has very well done nothing but keep me in this state – no better but no worse. Because I surely should feel better by now, or at least starting to feel better? Because I’m annoyed that I’m in the 3 out of 4 people who fail this. Because waiting for a scope before waiting for a surgery is going to be such a long process. And I go between feeling 85% sure I’m okay with surgery and then feeling like I’m no way near THAT place yet and this can’t possibly be happening, there must be something else! And that place is where they say “nothing else but surgery is going to work for you now”. It’s utterly frustrating. I have to keep reminding myself that this isn’t it, it’s not over yet, I have Nottingham next week but I’m feeling weaker in my spirits every day. Frustrated? Try shattered. Mental miserable.

But you hide it so well…!

*rolls my eyes and makes a squiffy face*