Just when you walk into a review thinking you know what your doctor is going to say…. I think it’s one of the things I hate the most about this disease – how unpredictable it is, well that, and how fast things change.
Let me take you back one year…. I was told I was mostly stable and that I could start making plans again… I was feeling better than I had been and yes, I was starting to get my life back on track, reconnect with people I had to push away to get through the first 12 months post diagnosis and treatment. I was happy with that – I saw a semi-normal life for me and Stocker…
The last month has turned all that on its head. I have been moved out of the “stable” category. My Crohn’s is active again, very very active. My reviews are back down to monthly (they were out at 6 months toward the end of last year) and I am feeling depressed and yes, sick.
So let me set the scene for you: Thursday the 5th of April was my abdominal MRI – they were looking for how bad my stricturing had got (ie. how much they were going to cut out). I was sick for our Easter long weekend – which sucks, but sadly it’s something I’m used to now. Still, I pulled myself out of bed and forced myself into work – I am wondering “why?”. Tuesday I got sick call after sick call – people with the flu deciding not to come in. I was jealous because I don’t have that decision – I have to come in, I have to be here. But at the same time, I was glad they weren’t coming in – getting the flu was the last thing I needed. I was so disappointed when one staff member (who knew my medical pickle) came in and leaned all over me and my desk – complaining about having to get a doctors certificate for having a second day off. I was disappointed because I’d love to take one day off when I’m sick rather than having to come in, pretend that I’m alright and try to hide my very obvious and embarrassing symptoms. And I was disappointment because he knew I was sick and got visibly upset when I told him to stay away from me. The damage was already done though – I woke up Friday with the beginnings for the flu – but in to work I went regardless. Wait, I’m jumping ahead.
Thursday I was to get my results – it was also Stockers uncles funeral. He was obligated to go there, so I went to the review alone – thinking that “he can’t tell me anything I don’t already know”. I was proven wrong again. We had the playful banter about holidays – then it got very serious, very quickly. “So – lets talk about your results” he said with a look on his face I can’t quite describe. Turns out my bowel doesn’t look too strictured. YAY – time to celebrate right? Wait – then why am I so sick? My small bowel has a 5 inch (about 125mm) section of very active, drug resistant disease. When I was diagnosed it was thought I had a small amount of disease with a two inch long (about 50mm) stricture. This means that it was just sever swelling all along, that its more than doubled in size in 2 years, and its become resistant to the Entocort. Saying it like that – it sounds pretty simple. Read it slowly – its actually a lot to take in. I was a bit thrown by this news – everything I had come to believe about my disease had been wrong. If they’d done the MRI rather than the Barium Swallow at the start would my treatment have been better? Its really hard to tell – maybe? “What do we do now?” I asked. He said “surgery?”. I told him I couldn’t – Ross informed me later that was a lie – and perhaps it was just that – a selfish lie. But I have taken other peoples feelings and minds into consideration throughout this whole process – I think I have the right to be just a tiny bit self indulgent. Anyway – He looked at me blankly and said “ok – I understand”. Who is this man? Seriously? He knows what I am doing is risky – but he is going to help me, because what? He understands? I have never been so sure that I’m in the right place. To try and beat the disease into remission – or at least reduce the swelling in my bowel, he has put me on the highest short dose of Prednisone he can, then we review and start a biological agent in May/June. They are back on the table after the revelation that my problems weren’t from stricture but a very swollen bowel from very active disease. How do I feel? I’m scared – scared to death. But here it is in short: I have always said I would trade 10 good years now for a long future of illness. I stand by that. This treatment might be able to give me 10 good years. Then, we’ll deal with the consequences after that. I’m getting ahead of myself though – the prednisone has to work first and there are no guarantees. If the Prednisone is unsuccessful then I will be booked straight into surgery – do not get married, do not collect $200. Nah – I’ll be able to physically walk down the isle – but that’s about all, I will be sidelined for the remainder of the trip. This is the cause of action we are taking – I am going to try and stay positive (for a change).
The Prednisone – yes, I’ve been avoiding it from day one. The drug with 4 pages of side effects…. on a short course, they think only a few will apply to me. It makes you sick to your stomach… you can’t sleep… stressed and irritable (cause I need more of that in my life), and it makes you put on weight. That was probably the thing that bought me to tears – silly I know. I have worked so hard to move my Crohn’s weight – I am down to 58kgs from well over 65kgs. I was so proud of that achievement. He said it will only be 1-2kgs, but in my head, its just the disease exerting control over every area of my life again. Regardless of the side effects – I’ve started the medication. My reality is – this is what I have to do, so STFU and do it. I think more than anything this is what I tell the people in limbo – who are clearly sick but can’t get a firm diagnosis, I know you wish for answers, but sometimes, the treatment is worse than the disease. Sometimes knowing doesn’t make you any better off.
I had a coffee after the meeting – to calm myself down (a stimulant to calm down – I know how f**ked up that is, don’t worry), I didn’t look it on the outside but I was a bit wound up on the inside. Then into work I went – an emotional wreck. My boss said “how’d it go”, I replied “we need to talk”. His face dropped – he knew. I went into his office, but left the door open. This is real – its about time everyone here started treating it like its real – not just me. I don’t care who hears, I don’t care how they feel about it. I told him the story… and that I could go into surgery with only a few weeks notice… and that my recovery time was 4 weeks if everything goes well (the reality is its probably more 3 weeks but I have the sick leave and my head hasn’t been good for a while, so mentally – I think any extra week will be good for me). He was shocked and concerned. I do about 3 jobs here so losing me for 4 weeks will be like losing his arm. This is it – this is where we are and I think he could tell by the look on my face that surgery wasn’t my preferential method of treatment – it was the last resort, and we were fast approaching it. He told me the company would support me – and not to sound cocky, but I would hope so after 9 years of busting my arse and going above and beyond. I also told him about the Prednisone and that everyone needs to give me a bit more space and understanding over the next month – he seemed to get that too. So that’s it – Full Time Job is on notice.
Friday I came down with the flu – I was still in shock a little over what had happened at the review the day before…. and it really was the last thing I needed, especially considering my workload – I am unable to take a day off. Generally in a healthy person that’s potentially problematic. This is my situation, I can’t complain even though I’d like to. I’m just going to take it as me being SO good at my job they can’t live without me. Yeah – that’s it. Pity they don’t see me as quite so important when I ask for a pay rise? Funny how things work isn’t it?
I am really lost at the moment – I don’t know whether to hope for the Prednisone to work or the surgery to come quicker…. Its like a fun new type of limbo. The question burning in my brain is this: if my disease is drug resistant and aggressive like they are saying – after the surgery, then what? How long will I have and what are they going to do? Is there anything the can do? Or will it just be a case of making the best of the time I have then going in for more surgery? I am feeling alone again… no one could possibly get all the decisions or scenarios spinning round in my head – although I know that people are trying, harder than they ever have before. And while that doesn’t make it all better – it is softening the blow. I feel like – for the first time, other people are starting to take this seriously – as seriously as I need to take it every day. I suppose that’s it really – I am tired. I can hold myself together – lots of practice at that, but mentally I’m tired of dealing with the disease, with people, with the treatment, with the outcomes, with the decisions, with trivial shit…. I think my brain needs a holiday… I have put my body through a lot already, I know it can cope, but my head isn’t fairing so well. Its a lot to take in, its even more when you have to try and explain it to other people who, I know mean well, but keep telling me how lucky I am its not cancer. They say that because they don’t understand what Crohn’s is, and what in fact, chronic illness does to you, your head, your family and your life. While I would never wish I had cancer, sometimes I wish that the same education went into Crohn’s and chronic illness. Its so hard to explain – the way you feel when all people can say is: “but you don’t look sick”…..