What happened on Friday night will remain etched on my mind forever as one of the worse moments of my life so far with an ostomy. It was also the moment I realised I had to have the operation to make my ileostomy permanent or I would live the rest of my life in fear of humiliation, pain and discomfort.
It was probably the final straw in a very long and painful journey, and perhaps exactly what I needed during these final days before my big op.
This entire week (well last few months really) has been a battle. I’ve been living in a constant flare for so long I can hardly remember what it feels like to be well (how I felt in the weeks after my op). I have no idea how such a tiny bit of bowel can cause so many problems, it must be ulcerated beyond belief to be causing so much pain. But the last few months my colitis has starkly reminded me of what life was like before my operation and the horrific pain simply being alive every day entailed. The impact that tiny bit of inflamed bowel has had has been astonishing, and I no longer know how I coped for 13 years with the constant pain, vomiting and diarrhoea. I was either very stubborn or a saint to put up with the torment for so long, and it is something I can no longer comprehend.
Over the past few weeks my health had gone rapidly downhill. My nose is so stuffed with impetigo – it bleeds and cracks when I dare to sniff or crinkle it, and my eyes have gone bright red and tender. This morning I woke up and one of my eyelids was glued together – something that not only hurts like hell but makes you feel like your tearing your lids apart as you prise them slowly open with hot water. My joints pull and crack as I move and it hurts to lie down. My fistula constantly pulls and tugs, making me nauseous, and is producing around two pints of blood and mucus a day. And despite my bowel not actually being connected to my digestive system, I still, for reasons beyond comprehension need the loo with upmost urgency five or six times a day – but I am unable to fart (cruel beyond words).
I guess the result is I feel like a withdrawing crack addict – the reality is my ulcerative colitis is saying goodbye in style.
Anyway, on Friday, with just days to go until the dreaded op and with doubt still hanging over me like a dark shadow of doom, I pushed away my pain and fears and headed out to a black tie event with my boyfriend. All day my fistula had been playing up; it pulsed in a sickening manner all the way through a law refresher at the Liverpool Echo offices, almost leaked through its bag as I was talking to shocked shoppers outside an alleged knife attack in an Ellesmere Port supermarket, and had general paddies all day. Despite this I dared to put on one of my favourite dresses and head to an evening for my boyfriend’s work.
The evening was filled with the elite from the engineering world, the local MP was there and it was a generally fancy and elegant affair. I was enjoying myself chatting with Andy’s work colleagues and eating some decently edible food, but in never stooped being aware my colitis was not going to be cut away from me without a fight. Safe to say I couldn’t fully relax through fear of my ostomy exploding or fistula leaking, and kept nipping to the loo to check everything was fine. It always was.
What happened was worse than I could ever have expected.
We had just finished eating and I noticed a small mark on my blue dress. I looked down and noticed the mark was a little bigger, then I slowly noticed my dress was damp. My first thought was that I’d spilt water over myself, my second was that my ostomy had leaked. As I stood up I realised the situation was far worse, my dress was saturated. Luckily the room was dark so no one could see the full damage, but I knew right then something had gone badly wrong and this was not a slight leak or, as I’d wrongly thought, a slight water spillage on the front my beautiful dress.
My dress was so wet I could hardly walk as I staggered to the bathroom. As I inspected the damage I almost burst into tears. I’ve experienced some of the most horrific and darkest moments of my life in toilet cubicles (passing out, doubling over, sobbing, sleeping on the floor, screaming out for mercy and help) but this was one of the most panic stricken and desperate of all. It took everything in my power not to breakdown.
The under layer of my thin dress was so soaked in blood I thought I’d been stabbed. As I inspected the damage I started to think I’d started my period or badly cut my abdomen. My knickers were so soaked in sticky mucus and blood I actually, I’m ashamed to say, took them off and thew them in the sanitary towel bin. The blood – which I quickly realised had been caused as my fistula spurted out mucus with such force it pushed off my fistula bag (baby Stoma bag) and shot out all over me instead – and horrific smelling mucus was all over me…it even trailed down my leg…I even had it on my foot.
For a moment I just sat and gawped in total shock. I couldn’t understand how I hadn’t felt it happen. How did I not notice this disgusting smelly substance leaking all over me? Then I realised this was going to ruin my evening and stop my partner spending time with his colleges, and stupidly thought that by moping everything up with tissue I could get away with it. But I soon realised no amount of toilet roll was going to shift this, I was simply caked in it.
By the time we got home I was in tears. As I got in the shower I stared at my body, at my fistula, and i wanted to rip it from my body, I wanted to scream and scream how much I hated the hand I had been dealt. And as I changed the blood soaked bags I took pleasure in knowing it would be one of the final times I would have to deal with this horrid second bag, which leaks and drips every couple of days and leaves my skin blistered and weeping.
By the time my tears were dry and dress was in the wash I realised that this was exactly the sort of humiliating, painful and exhausting moment I needed to realise I was making the right decision. People may not be able to tell I have a ostomy bag (I often forget) but they/I sure as hell know that troublesome fistula is there. Especially when it leaks repulsive smelling grunge everywhere.
And you know what everyone, especially me, could live without that forever.
In the words of the Lion King – it’s time!