So, Gautier and I went off to the hospital last week to get the results of my small bowel MRI. I’ve spent five months feeling as though my world has caved in, that Crohn’s would finish me off where colitis had failed to 13 years ago, and that it would be sooner rather than later. Not only was I running out of fight physically, but mentally, too. Hardly surprising, all things considered.
Although I’m asymptomatic for Crohn’s, I was the same for ulcerative colitis. With that disease I had no pain, no weight loss, no rushing to the loo, nothing but the tell-tale loss of blood from my under regions. I had no idea anything was wrong this time until I had the endoscopy, and now I just wanted to know how wrong things were.
Apparently the MRI showed exactly what the endoscopy report from Guy’s showed – that there is ulceration in my j-pouch which continues along 5cms worth of my ileum. Brighton’s report had said that my pouch was ‘clear’; their mistake led to them assuming I had Crohn’s. Guy’s, on the other hand, said, ‘Let’s see what the MRI says, because it’s your j-pouch which is ulcerated, and there’s a good chance that is treatable.’
And so to last week.
‘It’s actually more likely that it’s pouchitis than Crohn’s’, said the consultant, breezily. I mean, this was good news, so I get the upbeat delivery, but it wasn’t the news I had been expecting.
Seriously, what the what?
Yep. It doesn’t mean that it’s not Crohn’s for sure, or that I won’t get it at some point – I could be diagnosed next week, next month, next year, in two years… there is no telling with IBD, and it’s pretty unlikely I’m going to avoid reversal of my j-pouch back to an ileostomy if I have recurring pouchitis. However, I’m taking the good news and running with it – right now, it’s maybe not Crohn’s. I’m on strong antibiotics and will then be on a course of mental pro-biotics to even things out.
If I can persuade Guy’s to do another examination, I’ll know if it’s worked.
So that’s where I’m at; a heady mix of relief, bewilderment and anger.
I’m angry because the hospital which left me to die 13 years ago presumed the worst from sigmoidoscopy results which were actually completely wrong, and subsequently scared the life out of me.
I’m angry because I was told I’d need to take steroids, Azathioprine (just read the side effects of this beauty) and probably switch biological therapies. Switching is not as simple as it sounds; the one I’m currently taking – Enbrel – works for ankylosing spondylitis. I am testament to that; I came off it last summer and couldn’t breathe by day eight the pain was so excruciating. Humira, the biologic used in IBD, and a newer, ‘sister’ drug of Enbrel, doesn’t work as well for AS. That’s meant five months of me wondering whether the AS or the Crohn’s would kill me, because it would be one or the other – to treat the Crohn’s would mean not treating the AS. I can’t live without Enbrel, and that’s a fact.
I refused to consider steroids. I refused to consider azathioprine. I refused to consider any kind of medication until I had had an MRI to see exactly what was going on. I asked to be referred to the dietician instead, reasoning that I could discuss ways in which I could change my diet to improve my chances. As it is, I eat so healthily already I wasn’t sure I could make any improvements. I’d already cut out gluten and dairy, I’ve never eaten processed food – no takeaways, no ready meals, no fizzy drinks, blah blah. No fruit juice (never have), a low-sugar diet in general and one which is high in protein and ‘good’ fats. In short, I was already doing everything right, I just wanted to see if I could do anything more.
I wasn’t asked about my diet at any stage. I volunteered the information, but still, no discussion.
Instead, I was told to actually stop eating.
For two months!
I was told that the only way to bring the inflammation down was to drink milky, sugary, high-calorie drinks made by a well-known multi-national confectionery company. For two months. That’s eight weeks, or 56 days. No tea, no coffee, no booze (and I’m not sure I can live without that, either), no nothing – just banana or chocolate or strawberry flavoured sugary milk while I continue to cook dinners and go actual food shopping so that I may feed my husband.
Of course, anyone with more than six brain cells knows that sugar causes inflammation, and that lactose can also cause an adverse reaction in the gut. I also knew that I wasn’t malnourished, nor was I having trouble absorbing food. There was no reason whatsoever to put me on a liquid diet – and a questionable one at that – for eight weeks. None at all.
‘But this is what we do with patients with IBD’ said the dietician, looking exasperated.
‘But why?’ I asked.
‘Well, we don’t know how it works, it just does,’ I was told.
I was hoping for a more constructive answer than that. Initially I was in tears. My idea of my own liquid diet – anti-inflammatory smoothies and soups – was rubbished. Eventually I thought, ‘hang on, this is bullshit’. A letter was sent to my GP saying that I had gone against medical advice in following an anti-inflammatory diet (because that’s bad how?) and in turning down the recommended treatment, ie. not eating actual food.
‘Are you refusing treatment,’ he enquired.
‘Well yes,’ I said, ‘at least until I know I actually need it.’ Christ.
The very next day I implemented my anti-inflammatory diet into my already low-sugar, 95% gluten and dairy-free diet (I have the odd lapse – nobody’s perfect, right?) and lo and behold, I’m now told I don’t have Crohn’s anyway.
Anyway, as usual, I digress. We left the hospital, with me still going ‘Eh?’ and I called my parents the moment we stepped outside.
‘I’ve got good news, and bad news,’ I hollered over the traffic. ‘The good news is it looks like I have pouchitis, not Crohn’s. The bad news is you spent a fortune taking me to New York, possibly for no reason.’
Dad was so happy to hear that I might not have Crohn’s that I don’t think he was that bothered about the money.
‘Let’s hope they’ve got it right, and it is pouchitis,’ said mum.
‘Well,’ I said, ‘this is the thing – they keep getting stuff wrong, so how do I know that this time, they’ve got it right?’
The answer is, I don’t, but I’m seriously hoping that Guy’s hospital will also tell me it’s not Crohn’s at this stage, too. It’s just a shame I don’t have an appointment with them until September, which will take it up to seven months of ‘dunno, maybe, could be, might not be, let’s see, let’s see a bit more, dunno, maybe, yes, no, maybe, up, down, dead, alive, better, worse, good, bad, dunno, wait, maybe’… and so it goes on.