So, it’s happening.
It’s not official yet but, it looks like it’s happening.
I guess I should probably explain what “it” is. So, for the past two years I have been in what they call “active” crohns disease. I have over 40cm of my stomach affected by the disease in four different places, the largest place is 20cm of my small bowel. I have been on four different types of immunosuppressant medication, with little to no success. Earlier this month my doctor said, and I quote; “I’m running out of toys to throw at you.” Meaning, he has officially run out of drugs to give me. He suggested that I go to London for a “second opinion.”
So on Monday that’s exactly what we did.
Now, I’m currently on a drug called Vedolizimab, like most immunosuppressant drugs the idea is that it lowers your immune system enough so that your immune system stops attacking itself and gives your body time to heal. According to my Doctor most people experience an improvement in their symptoms within the first four weeks, I have been on it for sixteen and no such luck. The London Doctor told me that while most people do experience improvement as late as 24 weeks. So he wants to keep me on the Vedo for the next 8-10 weeks in the vain hope that it might finally do something. Though he admitted it is probably unlikely.
In the meantime he is starting me on a liquid diet, to try and boost my energy and give my body a rest. The diet will last 8 – 12 weeks. Another reason he’s putting me on the liquid diet is to prepare my body for surgery.
Because that is most likely what’s going to happen. An appointment is being made for a surgical consult and dietician. We all know how this story is most likely to end.
The title makes sense now, right? Snip, snip, bitch.
For so long I put off the idea of surgery. I wanted to exhaust all medicinal options first. But now, I’m tired dude. I have no energy, my ability to do almost anything has been compromised. I actually want to start work again eventually, you know? I’d like to eat a meal without my body rejecting it twenty minutes later. I don’t want every day to start with me spending over an hour in the toilet. I’d also really enjoy a break from all the stomach pain and queasiness. I want to feel like me again, I want to get some of my confidence back because, gosh darn it, crohns has chipped a whole lot of that away.
So yeah, if they want to reach inside me and pull out the part of my small bowel that is giving me the most grief, I say be my guest. Cut the fucker out, burn it dammit! Heck, get creative, attach the bastard to some fireworks and light the sky up something special.
I’m not gonna miss that bitch.
Surgery scares me a little, I’m not going to lie. But it has been explained to me, I’m unlikely to be getting a bag from the surgery and if I do it will most likely be temporary. Sure, I’ll have a nice scar as a souvenir but I can always tell people it’s from where I rugby tackled a shark or got into a scrap with Paris Hilton’s left high heeled shoe or something equally ridiculous.
What scares me most about having surgery is the whole going to sleep and waking up hours later element. I mean WHAT HAPPENS WHILE I’M UNDER DAMMIT? WHAT IF SOMEONE DRAWS A FAKE MOUSTACHE ON ME? OR WORSE, A DOCTOR ACCIDENTALLY DROPS THEIR WATCH INSIDE ME? I’ve seen Greys Anatomy man, I know what happens.
But it’s gotta be done. I can’t keep going like this, I’m running on empty and I don’t like it. And as long as I’m in active disease it affects other areas of my health too; anaemia, osteoporosis, fuckin’ fertility.
Oh that’s right, it affects my ability to breed too.
They say that they’re better at preventing Crohns from coming back with drugs than they are getting rid of what’s already there. So, that’s positive.
Crohns is a disease without a cure, but they’re always coming up with new meds to help manage it. I’ve just been unlucky in that respect.
It feels like for the past two years my life has been in stasis and I’m hoping that surgery will change that. I know that Crohns often returns next to the place that it was previously removed but I’m hoping that the Doctor’s magical cocktail of drugs will keep it at bay for as long as possible. And hey, who knows, maybe when it returns they’ll have some new wonderdrug to get rid of it. Or, dare I say it, a cure?
But I can’t ponder on that right now. What I’ve got to do is focus on what’s in front of me now. And that is three months of no food and a purely liquid diet.
I wish I could sound more enthusiastic about it.
But…imagine the excitement when I have my first bite of a burger after three months of no food?
Anyway, that’s all from me interweb!