'You're just in the unlucky 5%' - Falling the wrong side of the stats

Hello all!

It's been a while since I last posted here (again). This time I'm not going to make any more promises to keep writing this on a regular, because every time I do, something inevitably gets in the way (work, uni, future life plans, being ill). I find that I come back to my blog when I'm inspired to say something, and sometimes those days are few and far between, so please do bear with me!

I've now had a fully functioning J-pouch for around 15 months, 3 months of which were absolute, life-changing bliss, the other 12 a constant battle against my new arch-nemesis, pouchitis. 'You haven't got a colon anymore? That's great, so no more Ulcerative Colitis, right?' These days, I'm asked this question and immediately get a sinking feeling in my chest. Things have hardly been easy since the reversal, but I am finally starting to accept that there is no 'quick fix' for IBD. Not even chopping the stupid colon right out.

Me, when someone tells me my IBD is 'cured' post-surgery

For those of you who don't know my story, I was diagnosed with severe Ulcerative Colitis back in December 2013 when I was 19 years old. 2 weeks later, having only heard of IBD 14 days before, I was in theatre having an emergency operation to remove the majority of my large bowel.

I lived with a stoma for nearly 2 years - and during this time decided to have a 'J-pouch' created, a surgically-made reservoir of small intestine that is 'sewn' to your bottom internally, so you don't have to wear a stoma bag. (See here for more info: https://www.verywell.com/j-pouch-1942973)
In December 2015, I had my ileostomy reversed and my J-pouch 'connected'. Woohoo, butt poops again! (Little wins.)

The problem with a J-pouch is, it's not some simple quick fix. J-pouches can develop lots of problems of their own. One of the biggest of which is POUCHITIS, in my opinion a stupid name for a condition that someone probably made up when they were bored ("Oh, so it's a pouch? And it's inflamed? Well that'll be pouch-itis, obviously").

Pouchitis is basically like IBD for your small bowel. You get bleeding, diarrhoea, painful cramps, fatigue, nausea. They don't really know what causes pouchitis, and other than antibiotics, there's no real treatments. If antibiotics don't work (as they haven't for me), you're in the 'unlucky percentage' that need to seek other treatments. For me, that'll be a clinical trial drug - watch this space, I do plan to write about that when it begins.

This is where I come on to the topic of this post - 'unlucky percentages'. Now, I'm not a superstitious person. I love black cats. I walk under ladders. I smashed my hand mirror (in hospital being treated for UC actually - perhaps actually the source of my problems) and I'm not freaking about it or anything. But I am beginning to feel that statistics have it in for me.

I think getting UC itself was pretty unlucky to be honest, but that's not really where this starts. When I was diagnosed, I first met my gastroenterologist and listened in horror as he explained to me what IBD was. I has just been admitted to hospital via A&E - my own fault, to be honest. I'd ignored my worsening symptoms for 12 months out of embarrassment, and by the time I was admitted, my colitis was at a life-threatening stage, affecting my entire colon rectum to cecum. I was told all about UC, what it was, how it was treated. I was assured that after a dose of steroids, most people made it into remission (although I'd still have the disease for life, of course). Nevertheless I was optimistic when I began the steroids.

That was, until 3 days later, when my symptoms remained completely unchanged. Nothing, whatsoever, was different. Somewhat flustered, my medical team switched me to 'rescue therapy' Ciclosporin. 'This works in a large percentage of patients', I was assured. This was around the 20th December - and I held out hopes I'd go home for Christmas.

Yet here I am, on Christmas Day 2013, waiting for the promised 'remission' in my santa hat, Ciclosporin still pumping into my arm.

This continued for days and days. New Year's Eve arrived. At this point, my symptoms had slowed, but were still very much there (I remember arguing with the gastroenterologist that my bleeding had stopped, so that was good, even though I was going to the loo about 20x per day. I argued that I'd rather live with this than go for a bag.) By this stage, they'd started to tentatively explain stoma bags to me. I angrily refused visits from the stoma nurse at first. This wasn't going to happen to me. Most patients responded to Ciclosporin, right?

Yet here's me, on January 3rd 2014, in HDU recovering from my emergency colectomy. My colon started bleeding uncontrollably on New Year's Day, and I was in theatre on the 2nd.

My thumb might be up, but I'm not chuffed

According to the CCFA, about 23-45% of UC patients will need surgery at some point in their lives. This is significant, but it's not that many. And I certainly doubt that so many need surgery 2 weeks post-diagnosis. I'd already felt a little cheated by the stats at this point, but little did I know what was still to come.

In June 2015, I had my second operation to remove my rectum and create the J-pouch, along with a 'loop stoma' to divert the stool for a few months and allow the pouch to heal. Sure, it's a big op, but it was planned, I was well, and ready to go. There are risks of complications from this operation, but not massively significant. Things all went brilliantly - until 7 days post-op, I had a major, life-threatening bleed - an internal stitch had split (no fault of my surgeon whatsoever, just to clarify). I needed blood transfusions, clotting agents, and an extra week in the hospital. (At the time, I blogged about this: http://thisgirlsgotguts.blogspot.co.uk/2015/06/day-9-post-pouch-when-things-don-go-to.html)

I was later told that this particular complication happens to 3% of patients. T-h-r-e-e.

Nope.

Thinking it was all a bit of a joke by this stage, I went on to have my pouch reversal and things were going swimmingly until 3 months in, I got my first bout of pouchitis. Not so unlucky this time - up to 50% of new pouchies get a bout of it in their first year. I took some antibiotics and thought nothing of it. Until it came back. And I took a second course, and it came back again.

By the 9th course of antibiotics a year later, having tried several different types of them (Metronidazole, Ciprofloxacin, Co-Amoxiclav), and finally being diagnosed with chronic pouchitis, I've found out this happens to about 10% of people. Seriously, by this stage, I gave up with the stats. Maybe it was that smashed mirror, after all.

Now, next Friday, I start on a clinical trial of Alicaforsen, what will be the first drug in the world specifically designed to treat pouchitis. I'm optimistic, and I'm trying to ignore the nagging voice in my head about stats. Surely, I'm due for some luck this time. If it works, it truly will be life-changing. However, it's a blind study, which actually means there's a 50/50 chance I'll be given the real drug, or just a placebo. Time for fate to smile on me, let's hope.

I don't mean to whinge with this blog - although it's a pretty big whinge! It's something I've found amusing (somewhat dark sense of humour) throughout my treatment, and I thought I'd share it. Perhaps it's something that others can relate to, 'being on the wrong side of the stats'. Or maybe it's just the nature of the beast that is IBD!

While I can't promise super regular updates, I will be blogging about my experience with Alicaforsen and how it goes - a clinical trial is totally new territory for me, and should hopefully inspire some writing.

Best wishes to you all! x