I was so focused on today being a change to a Biological treatment – it almost totally slipped my mind that they weren’t the only course of action.
So here I am… after my consultation… and I am numb. I have been numb a lot lately with regards to this disease. Who was it again said the first year was the hardest? Oh thats right… me. People should really tell me when I’m being a fucking idiot.
Stocker came with me today – afterwards I really wish he hadn’t. I really wish I have of gone alone, like I always do. His reaction to what’s going on has made me perhaps the most numb. I keep reminding myself that it’s because he doesn’t get it… but I keep coming back to: shouldn’t he at least be trying to?
If you haven’t guessed by my very mysterious title, we spoke fairly frankly about what will be the first of many surgeries for me. This was always the worst case scenario… I had convinced myself over the last 18-months that it was years away. Today it sounded as if my doctor wanted it done in the next 6-months. Neat trick considering there is a substantial waiting time for elective procedures. Wait – I get it, its no longer elective.
To me, this first surgery symbolizes them opening the door to that being the answer to all their problems. She gets too sick, lets cut more out. Strictures returning, lets cut more out. We just don’t know what to do with you, lets cut more out. He even pseudo admitted that this will dictate a lot of my future treatment. I heard that part – Stocker didn’t.
We spoke briefly about the Biologicals (which are equally scary to me) and after my performance over the last few months, decided that they would provide no help. They are mainly designed for the fistulating and inflammation types of Crohn’s – not so much mine, the stricturing type. My doctor went on to say that there was data the Biological treatments actually make strictures worse. I don’t know if I was more happy that ruled it out for me or distraught that I was a few short steps away from going under the knife.
Stocker acts like its no big deal, he informed me this morning that “he’d had surgery”. I tried to put what I was feeling into words… but I was dumbfounded. I really need support right now, not someone telling me what I’m going through “isn’t a big deal”. My biggest point is: when you had surgery – did they fix what was wrong with you? In most of those cases the answer is “yes”. They will never fix me. They can cut till there is nothing left to cut and I will still have this disease. My doctor said it can be as little as 6-months before my bowel shows signs of the disease again and 5 years before I have strictured again. I will go through surgery, wake up, and I’ll still be sick…. I just wont have the stricture. Someone needs to explain to me how this is a good option? Because I’m not seeing it. Stocker almost seemed happy about it – like this was gong to solve all our problems he heard the “I’ve seen cases last 20 years before follow up surgery” not the “usually we get 5-10 before we consider it again”… and what about me in the meantime? Sure you are fixing the physical symptom – the result of years of abuse… but the disease? Its still here. Making me run to the toilet 20 times day… making it almost imposable for me to get out of bed some days. I have a whole list of fun things this disease dose to me – this surgery wont even correct one of them… I will feel… like I feel now… I will have to eat like I eat now… I will still have to take the medication I take now… I will still think how I think now. I don’t know how to explain this feeling to people who don’t have the disease… At the moment I want to blame someone for all this.. I want to hate someone… but who…? Who’s fault is this? No-ones? Mine? Mine for not pushing to get answers earlier when I was so obviously sick? I do hate myself a little bit right now, and I do blame myself for things being this bad. I want to cry and be upset and indulge this feeling of despair just for a few hours… but the world wont let me. I have two jobs to work, a wedding to plan and a house to keep in order… I can’t feel sorry for myself for even 2 minutes… and whats perhaps the worse? I am not getting any empathy from the one person I really need it from. To hell with the rest of the world… I am not telling most of the people in my life where my heads at or whats happening to me… but him… I thought he’d see it? I thought at the end of the consultation today he would wrap his arms around me and tell me it was going to be okay… He just looked stoney faced through the entire thing… like nothing that was happening to me effected him in the slightest…
I love all my friends and family. I try and be there for them… but right now… I can’t even have a phone conversation with any of them… because I’m afraid they will see or hear me falling apart on the inside. Never the outside though… because I have to be professional and strong and all the things I’m not right now. The front I am being forced to put on in public is eating away at me… the things that people say to me without thinking are like knives cutting at me… I look at myself now and just see pieces of the person I used to be and… I am not sure I can ever put them back together, at the moment I’m not even sure I know how to start…
Its true, the surgery itself isn’t a big deal in the grand scheme of things… but knowing I will wake up in exactly the same predicament medically with a few shreds of sanity left on the table… that idea, that knowledge… that is something no one else other that people with an incurable chronic illness will understand.