I’ve been treated for Crohn’s disease for two whole years – and I’m into my third.
On contact, a Crohn’s patient with active disease is usually put on a moderate course of a corticosteriod called Prednisone. Its used to treat a range of autoimmune diseases on contact or as patients come out of remission. So its not targeted to a specific disease and in the past, the analogy of being treated with Prednisone is akin to trying to kill a fly with a sledge hammer has rung pretty true.
There was about a 6 week gap between my unofficial diagnosis (on the table – post scope), and my first, contact appointment. During that time, I was able to research treatment for the disease that finally had a name… and some of it was troubling, particularly the bit about the Prednisone. Because my symptoms were still in the “mild” region (even though my complications were serious) I was offered a choice that day… one that I initially knocked back due to the price. I rang the surgery back the next day and got the prescription for the more expensive alternative, Entocort – with the help of my family and a bit of interesting money management (we ate mince for going on 6 months straight) we were able to, in the short term, afford what was sold to me as the better treatment. I’m sure it is. It has perhaps 4 side effects when the Prednisone has 4 pages of side effects…
One of the most troubling notations on the pages of Prednisone paperwork was “Psychological Involvement”. It troubled me because I have always been a fairly strong, mentally independent person. Of course, it was just a “possible” side effect – but it was enough to consider putting our new house back on the market and going on the better corticosteroid.
A few weeks ago, at my review, I was forced onto a very high oral dose of Prednisone. My disease has become resistant to the Entocort after early success with the drug. It’s also not responding to the immunosuppresants I have been proscribed. So the disease and I are in a bit of a stalemate. If the Prednisone doesn’t work, then only way to get the upper hand back – is bowel surgery. I know its a standard procedure and that they have THE BEST surgeons at GCH, but it still scares me. In my experience, very little good has come out of hospital stays – even though I know for a fact I will be taken care of.
I am almost through my second week of treatment with Prednisone, I’ve had 2 nights sleep in a fortnight and I feel like a total and utter nutbar. Yes – it seems the psychological involvement side effect really applies to me. I am not sure how much of my reactions is just “hot headed Amanda” or the Prednisone talking. Monday at work, I just sat here with tears streaming down my face… I was so depressed and down and lost that I couldn’t stop them. I sat here alone in my little cave being bitterly jealous of the people who have lives – I still am a bit right now, but moreso because in a world of big picture stuff, they choose to obsess and concern themselves with trivial things which stop them sucking every moment out of their life. I kind of want to slap them sometimes and say “you have a working body, throw yourself out of a plane, or go and eat at the most expensive restaurant, stay night at the Ice Hotel… go and have experiences, because you never know when that will all be over”. I cried a lot of Monday night… I just couldn’t stop. A friend said “go on anti-depressants” its not helpful because the depression is a side effect from the Prednisone and with everything else I’m on, I can’t take them. Its very frustrating chasing a condition like I’m chasing Crohn’s – fixing something with a drug only to break something else that needs fixing with another drug and so on and so forth. So right now, I’m on 5 different, full time medications to fix things, and a handful of others to try and correct side effects as they happen. Tuesday I was back to being the little energizer bunny who could, on speed.
I am lashing out at people and events in my blogs and in real life, and after one of my good nights sleep, I’m wondering how much of that is actually me and how much is the medication? I can’t seem to see where it starts and I finish anymore? I have never felt this psychologically out of my depth… this emotionally unstable. In the past I have always tried to be “that person” who can help with this emotional stuff. But right now, I feel so out of control that I can’t even help myself. Its like, I can’t control what I’m doing or saying. I have these moments where its literally like I am watching myself do or say things, separated from the moment in which its happening. What I am feeling is almost impossible to explain. Being this out of control of my mood and emotions is such a foreign feeling – such a bad feeling. They have always been the things I’ve been able to retain complete control of. While the rest of my life is going insane, while my body has let me down, I’ve always been able to control how I react. Sure sometimes I’ve made bad decisions in that area, but its always been my decision. Its a big thing for me to admit, but I’m not afraid to say I have absolutely no control over my moods, my emotions or my reactions. None. It makes me worry that… I might not get that control back. What if — its gone forever and I am lost like this for the rest of my life?
I’m not saying I take everything I express through my blogs back. I don’t. Some things are exactly as I have written them. I am, very much getting taken advantage of. I very much have no respect. But perhaps I am angry at the wrong people? I think I need to be angrier at myself for a lot of this. Because, like it or not, I am in this position because I gave too much for too long. Now I can’t do it, the expectations haven’t gone away.
I don’t know how much of this makes sense – and to whom it makes sense to. I think in another 6 weeks, if I do indeed get my mental facilities back, I will look back over a lot of my reactions during this time and cringe – but tell me, what can I do differently? I think this is one of the big problems with education around chronic illness – normal people think you want to be treated the same. That’s not what we want at all. We want people to look at us and know everything in our world has changed and that has invariably changed us in turn. We want people who aren’t chronically ill to look at us and see the different person who’s left – because we can’t just pretend that none of this has happened – as much as we’d like to.
We are not the same after diagnosis and treatment. We can’t be treated the same. Its like, not only do you have to train yourself to accept that you have changed, but you have to start teaching people around you too – and in a lot of cases, those people don’t want to learn because it ruins their world view. Should the minority impinge on the masses perfect world view? Its a question that I can’t answer. But as the epidemic of chronic illness grows and the minority stops being the minority – what then?