Crohn’s, colitis or maybe pouchitis? Who knows?

 

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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?

surprise-cat
‘Say 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.

 

'Yep, you're good to go'
‘Yep, you’re good to go’

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.

Yes, really.

For two months!

I wouldn't be needing these for a while
I wouldn’t be needing these for a while

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.

An antique childrens toy monkey that make noise
Dad was so happy he got his cymbals out

‘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.

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Living On A Prayer (well, living with IBD)

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Mostly Cloudy, With Some Bright Spells

So, my bucket list. I still haven’t actually written it. It’s pretty much just random ideas floating around in my head, mostly to do with travel, some to do with animal stuff and other ones which don’t make sense at all to anyone but me.

I started thinking about the things I still wanted to do (and I’ve done a lot of exciting things, so it’s not like I’ve waiting until I’m seriously ill to take an interest in life) back in February. That’s when I had the endoscopy which showed that there was ulceration in my small intestine and/or j-pouch. I’d always lived with the knowledge that my poor bowels wouldn’t hold out forever, despite the sterling job the surgeon had done on them.

Back in 2001 I had an emergency colectomy and woke up with an ileostomy. Nine months later I went in for reversal surgery (formation of the j-pouch) and came out still having an ileostomy due to the fact that I lost so much blood during the procedure they couldn’t finish the job. Five months after that, I finally had the stoma closed and the j-pouch functioning.

This is what a j-pouch looks like on a hermaphrodite.
This is what a j-pouch looks like on a hermaphrodite.

After that I flew to Las Vegas, fell in love and went on two roller coasters, a pretty good two-fingers up to diseases, I think, even if I was completely unable to walk for three weeks afterwards. Pffft! Who needs to walk, right? (I’m kidding).

If anyone is a bit squeamish, look away now. I thought I’d post a photo of j-pouch surgery, so you can see how much fun it is. This bloke’s having it done by laproscopy, which is bad enough, whereas mine was a massive, no-messing 11-inch slice down the abdomen. It hurts a bit after, as you might expect. I think they use the old colons to make rubber rings for lifeboats. What I don’t get is if they take all that muck out of you, how come you don’t cave in or at the very least, look slimmer?

laproscopy

As soon as I saw the ulcers on the screen and knew it could only be really, really bad news, I decided to do another ridiculous, two-fingers up to disease trip and as most of you will know, went to New York with mum and dad. There were no roller coasters involved, but five days in the Big Apple unsurprisingly rendered me physically incapable to do anything for days on end once I got back to the UK.

It didn’t matter, though, because it was a brilliant trip. You know what they say – ‘no pain, no gain!’

IMG_0262
I don’t eat there myself, but the McDonald’s in NYC sure is pretty!

I’ve been fortunate, in a sense, that I’ve had 12 years with relatively few issues with my new plumbing, save for some nasty blockages that have seen me in A&E. I’ve had pouchitis, and I have always suffered on and off from discomfort and inflammation in general. I can’t go out without worrying about where the nearest toilet is, and then when I find it, what state it’s going to be in. I have never slept through the night and I often have a bottom so sore it’s as if I’ve been bathing in acid. Too much information? Well, that’s how it is with IBD. It hurts, it sucks, and it’s not very nice. Anyway, I was hoping I might make it to sixty without it all falling apart; I already had enough to deal with given that my spine and hips and various bits of cartilage had already ruined me.

Alas, it was not to be, and tomorrow I go to the hospital in Brighton to find out the results of the MRI scan I had last month; this will determine the extent of the Crohn’s disease and, in turn, the course of action I should take.

But here’s the thing: I had the same endoscopy done two months later at Guy’s hospital in London. The consultant did it himself because he wanted to see with his own clever eyes what was going on rather than rely on another hospital’s report. Good for him, right? Less good for my bottom and my dignity, but that’s beside the point. It turns out that his findings were completely different to those of Brighton’s, but nobody in Brighton is acknowledging this. Guy’s say I have pouchitis (I can believe it, trust me) and an ulcerated j-pouch, with a splodge of ulcers on the ileum. I’m not sure they said ‘splodge’, but you get the idea. Brighton, meanwhile, reckon my pouch is clear (really?) and the ulcers are in my ileum and have completely ignored the diagnosis of pouchitis. Amaaaaaazing, not to mention unfathomable, right?

I also have an appointment to hear the MRI results read out at Guy’s, too, but that’s not until September. If, right now, you think I’m lucky to get results this fast from Brighton, hold your horses – the scan results have been in for a week, but no appointment was even in the system. I emailed the IBD nurse to ask her if I could possibly see someone before September, given how long I’d already waited to have the MRI in the first place, and I got an appointment the very next morning – an appointment I’m really not sure why I didn’t have in the first place if there was one available. Christ.

This doesn’t surprise me, though. Back in April I asked for an MRI and referral to the dietician (more about that coming soon). I spent five weeks waiting to hear something, only to find out when I called that nothing was in motion AT ALL – no referrals had even been even written, let alone appointments made. How are you meant to trust a consultant to look after you when they can’t even be bothered to write a referral note?  The very helpful and hugely efficient IBD nurse immediately wrote both referrals and I got appointments within five weeks, which just goes to show that it’s not that difficult. When you’re sick, waiting on results is one of the most stressful things you can go through. When you have results in the system but nobody makes an appointment to read them out to you, what’s the point of having the MRI in the first place?

Homer knows it. Watch

By the time I see the consultant at Guy’s I will have been in limbo for seven months. Seven months for someone with an exceptionally bad history of IBD. Seven months for someone who already has to deal with crippling pain caused by ankylosing spondylitis, not to mention all the exhaustion and stress that already go with generally having an immune system weaker than a punch from a kitten. Seven months of begging for appointments, then chasing up those appointments when they’re not made. Seven months of wondering when, not if, I will end up having surgery again. Seven months of nightmares about being back on that ward, nightmares in which I’m left in a pool of blood and shit on the floor, my intestines being pulled out by a flurry of dirty hands. Not nice.

In short, seven months of panic and stress. If you want to see how stressed I’ve been, look at my hands – it’s like rats have been gnawing at my fingertips.

Still, the good news is that I like going to Guy’s because it’s right by Tower Bridge, and Tower Bridge is my favourite monument thing of all time EVER and in front of that is only HMS Belfast, and that’s immense! Gautier is coming with me to that appointment and after the crap news we will climb up on HMS Belfast and learn about how battles went on in the olden days to cheer ourselves up and make me think, ‘My life is not so bad after all. At least I’m not on a battleship being shot at with canons and stuff.’

All aboard, where are we off to?
All aboard, where are we off to?

When I’ve taken stock of tomorrow’s results – and I couldn’t be more apprehensive, if I’m honest, if I were smeared in blood and dangled over a river bed of hungry crocodiles – I’ll be back with something more cheery – the story of Bucket List Number Two.