Yes, it's been a while since I posted my latest medical update, and you may wonder why. Alternatively, you may wonder why I'm posting one now, and that's probably the more interesting question. At least, that's the question I'm going to answer. The reason I'm posting one now is because I've been reviewing my medical posts and finding them quite useful. And why have I been reviewing my medical posts? Ah, well, perhaps we'd better fill in some background first.
My last medical post, back in 2009, held dark mutterings of redundancy and flat-selling and stress, coupled with a declining response to Infliximab. Looking back, I'd forgotten quite how grim things got, with the anal fissures and the inflammation round the anus. It was not a pleasant time. Happily, my personal circumstances are considerably better now, even if the medical situation is not completely perfect. I have moved down south to be with GF (now fiancée), bought a house and spent the last two years renovating it (a not-entirely stress-free experience). Over this whole period I have been on Infliximab and nothign else, and my response to it has been... okay - in general I've been getting maybe four weeks of good response, coupled with a couple of weeks of gradual decline before the next infusion. This was acceptable - the rough patches were sometimes pretty exhausting, but in general the worst symptoms were diarrhoea and exhaustion. However, over the last year or so this delicate balance has gone slightly awry. First, for reasons I don't remember ever identifying, I started getting problems with constipation. So the first week of my infusion I would get quite badly bunged-up. This would often result in quite bloody stools, and small anal fissures. I would have a week of constipation, followed by a bout of runny stuff, then go back to being constipated, etc. My bum suffered, as did I. Adventures such as taking GF (okay, let's just go ahead and give her a name at this point - she's called Lucy) to Venice for the weekend were traumatic and difficult. That was back in February. So after a few poor months, round about Easter I had a bad flareup and spent a fortnight off work. As a result (and admittedly a few throwaway remarks by yours truly) the hospital decided I was losing response to Infliximab and started talking about putting me into a drugs trial for something new.I went in for an assessment; it turns out I was only just inside the acceptance criteria for the trial - these things are decided by turning questionnaire responses into points, and essentially I managed to duck under the wire because I described my current state of health as 'very poor'. So far, so good. The only catch: I needed to be free of the Infliximab, which meant waiting eight weeks. Now I was presented with a choice - wait a fortnight (it was six weeks since my last infusion) and go straight into the trial, or have one last fling with the Infliximab. Because I basically did not believe I'd lost response to the Infliximab, I chose to have one last infusion. Sure enough, the drug pulled me back up, and I had a good four weeks. But as per the terms of the deal, I waited out eight weeks befoe phoning the hospital and re-engaging with the drugs trial process.
But here's the irony: when I re-did the acceptance questionnaire, it turns out I was too well to go into the trial! The only difference was I wasn't feeling quite so poorly, so had rated my general health slightly better. On the basis of this, I was no longer eligible. Also on the basis of this, the hjospital then decided to mave my infusions to eight weeks apart instead of six. On such tiny flaps of a butterfly's wing, great storms condense.
So fast forward, now to the present day - and I have to tell you, dear reader, the eight-weekly infusions have not gone particularly well. I have started a daily record of how much I poo each day (if you're lucky I'll publish some graphs at some point), and it shows a very steady cycle ove rth elast three months. I get between 25 and 28 days of good response to the Infliximab (by which I mean, pooing once or twice a day, with faeces of a solid nature) - and thereafter a fairly wuick decline ot the point where I am releasing a gush of liquid six, seven, sometimes even eight times a day. Having endured his since May, I have decided enough was enough and called the hopsital. So now I am back on six-weekly infusions... but they have also decided to put me on mercaptopurine, at the same time as the Infliximab.
So this brings me back to the question of why I have been perusing my old blog entries: because I have been on 6MP before, although it was so long ago I had forgotten what it was like. So when the IBD nurse at Addenbrookes asked me questions like "how did you get on with it before?" I suddenly realized I had something better than my own rosy memories to rifle through. Hence, rifling.
I say 'rosy memoies' because the blog posts suggest a slightly darker picture than I'd remembered. My recollection was that the 6MP had been good but not good enough, and I'd had a gradual decline over perhaps a year to the point where I'd ended up changing to a new treatment. However, it looks like the 6MP treamtent coincided with anal fissures... so I am somewhat nervous. Since I have some say inteh process, I am planing to delay the 6MP treatment for a while until we canget some visibility of how going back to six-weekly infusions is panning out.
My last medical post, back in 2009, held dark mutterings of redundancy and flat-selling and stress, coupled with a declining response to Infliximab. Looking back, I'd forgotten quite how grim things got, with the anal fissures and the inflammation round the anus. It was not a pleasant time. Happily, my personal circumstances are considerably better now, even if the medical situation is not completely perfect. I have moved down south to be with GF (now fiancée), bought a house and spent the last two years renovating it (a not-entirely stress-free experience). Over this whole period I have been on Infliximab and nothign else, and my response to it has been... okay - in general I've been getting maybe four weeks of good response, coupled with a couple of weeks of gradual decline before the next infusion. This was acceptable - the rough patches were sometimes pretty exhausting, but in general the worst symptoms were diarrhoea and exhaustion. However, over the last year or so this delicate balance has gone slightly awry. First, for reasons I don't remember ever identifying, I started getting problems with constipation. So the first week of my infusion I would get quite badly bunged-up. This would often result in quite bloody stools, and small anal fissures. I would have a week of constipation, followed by a bout of runny stuff, then go back to being constipated, etc. My bum suffered, as did I. Adventures such as taking GF (okay, let's just go ahead and give her a name at this point - she's called Lucy) to Venice for the weekend were traumatic and difficult. That was back in February. So after a few poor months, round about Easter I had a bad flareup and spent a fortnight off work. As a result (and admittedly a few throwaway remarks by yours truly) the hospital decided I was losing response to Infliximab and started talking about putting me into a drugs trial for something new.I went in for an assessment; it turns out I was only just inside the acceptance criteria for the trial - these things are decided by turning questionnaire responses into points, and essentially I managed to duck under the wire because I described my current state of health as 'very poor'. So far, so good. The only catch: I needed to be free of the Infliximab, which meant waiting eight weeks. Now I was presented with a choice - wait a fortnight (it was six weeks since my last infusion) and go straight into the trial, or have one last fling with the Infliximab. Because I basically did not believe I'd lost response to the Infliximab, I chose to have one last infusion. Sure enough, the drug pulled me back up, and I had a good four weeks. But as per the terms of the deal, I waited out eight weeks befoe phoning the hospital and re-engaging with the drugs trial process.
But here's the irony: when I re-did the acceptance questionnaire, it turns out I was too well to go into the trial! The only difference was I wasn't feeling quite so poorly, so had rated my general health slightly better. On the basis of this, I was no longer eligible. Also on the basis of this, the hjospital then decided to mave my infusions to eight weeks apart instead of six. On such tiny flaps of a butterfly's wing, great storms condense.
So fast forward, now to the present day - and I have to tell you, dear reader, the eight-weekly infusions have not gone particularly well. I have started a daily record of how much I poo each day (if you're lucky I'll publish some graphs at some point), and it shows a very steady cycle ove rth elast three months. I get between 25 and 28 days of good response to the Infliximab (by which I mean, pooing once or twice a day, with faeces of a solid nature) - and thereafter a fairly wuick decline ot the point where I am releasing a gush of liquid six, seven, sometimes even eight times a day. Having endured his since May, I have decided enough was enough and called the hopsital. So now I am back on six-weekly infusions... but they have also decided to put me on mercaptopurine, at the same time as the Infliximab.
So this brings me back to the question of why I have been perusing my old blog entries: because I have been on 6MP before, although it was so long ago I had forgotten what it was like. So when the IBD nurse at Addenbrookes asked me questions like "how did you get on with it before?" I suddenly realized I had something better than my own rosy memories to rifle through. Hence, rifling.
I say 'rosy memoies' because the blog posts suggest a slightly darker picture than I'd remembered. My recollection was that the 6MP had been good but not good enough, and I'd had a gradual decline over perhaps a year to the point where I'd ended up changing to a new treatment. However, it looks like the 6MP treamtent coincided with anal fissures... so I am somewhat nervous. Since I have some say inteh process, I am planing to delay the 6MP treatment for a while until we canget some visibility of how going back to six-weekly infusions is panning out.
