When you’re first diagnosed with a chronic illness, it’s a strange old mixture of emotions. In my case, relief that I was diagnosed so quickly, at the same time an uncertainty of how the rest of my life would be. Finding other people who had a similar experience became my obsession in the beginning. Then, quite by chance as I learned to navigate life with Ulcerative Colitis, I started following Bex on Instagram because of her beautiful home and I was AMAZED to find someone else who’d not just been diagnosed with Ulcerative Colitis but was talking so openly about how her life had changed and how she has learned to live with the condition. Amongst many things what Bex’ story will make you realise is that two people can have the same condition and have an entirely different experience. As always, I’m so grateful for everyone’s commitment because it is such a personal subject to open up about. Please do read, leave a comment and share as much as you can, I’m really willing this to grow and grow so that we can help as many people as possible who may be going through something similar.
In hindsight, losing 5 stone in 4 months on Weightwatchers should have been an alert that something wasn’t quite right, but in that moment I was basking in the glory of being ‘biggest loser’ every week at my weigh in meetings. Little did I know that my immune system was attacking the wall of my colon, causing it to become inflamed and severely ulcerated. Between me and you, I had started to notice a little bit of blood in my poo but back then I thought I was very uncouth to talk about poo so I just shut it out of my mind.
Over the next few months symptoms started creeping in – fatigue, upset stomach, urgency and frequency to go to the toilet, losing blood, feeling week. And after a bit of backwards and forwards with the GP and a couple of misdiagnosis’, on the 3rd November 2010 I was diagnosed with Ulcerative Colitis. By the point I was diagnosed, I was so desperately ill that I was taken straight into hospital and put on intravenous drugs. At worst, I was going to the loo 40 times a day and it was mostly just blood and mucus. With a brief break from hospital over Christmas and New Year (I decided to be stubborn and fly to Amsterdam – my poor parents must have despaired!), I was rushed back into hospital on 11th January 2011 and had emergency surgery to remove my bowel. I was very, very ill, my operation took a long time and I think there was a point when my parents genuinely thought I had gone. I woke up from surgery with an ileostomy, and a bag attached to my stomach. I was 21 years old.
What followed was another 3 years of countless complications, numerous surgeries, and time off work. I’ve always been a bit of a workaholic so I raced back as soon as I could and felt so disheartened every time I was told I needed another surgery and time off again, it was like Groundhog Day. Something I have always been is fiercely independent – I have gone to every single hospital appointment on my own. I know this broke my parents hearts at times, but I needed this to be able to process the (usually bad) news before I communicated it out loud. I guess this has always been one of my coping mechanisms.
One surgery was due to a post operative infection which was raging through my abdomen. I went back into surgery but they had no option than to leave my stomach open as the risk if they sewed me back up was too huge. I therefore had a 35cm long, 10cm wide 15cm deep open scar, which I learnt how to self ‘pack’ whilst I was attached to something called a VAC machine that I had to carry around with me for weeks to help accelerate the healing.
Finally, in late 2013 I had the last remaining infected areas removed which resulted in my rectum and anus being removed and sewn up – aka my barbie bum. To be honest, none of this really phased me. What upset me the most is my body had taken such a battering that my hair decided to fall out, leaving me with bald patches and general thinning. I think us women really use our hair as a sense of identity and a way to feel good – we’re all familiar with the term ‘good/bad hair day’ and there is a reason for that – it can really affect our mood so I don’t feel ashamed in saying this was one of the hardest things for me to deal with and accept. I still don’t think I really have and even though my hair has recovered, it’s not what it used to be and I still hide behind the comfort of hair extensions.
Lots of people with Ulcerative Colitis suffer with flares for many years and find surgery is a last resort that sees them ending their suffering. Whilst there is no doubt I suffered, in reality it was only for 6 months verses the years I subsequently spent recovering from complications post op. I wouldn’t say I saw my ileostomy as a relief per se, but I definitely see it as something that saved my life. I’d rather a bag than a box any day!
Living with an ileostomy is…fairly normal! In the early days you have to adapt; you learn what foods you should avoid (high in fibre is not your friend), how to change your bag, deal with leaks, tackle blockages etc but it soon becomes part of your day to day norm.
It’s not all negative either. Whilst I’ve worn a hospital gown more times than I’d care to, having an ileostomy is no hardship. It doesn’t restrict me, I can eat, drink, dance, have sex (chance would be a fine thing right now!) play sport, wear clothes all in the same way as others! A nurse once asked me how many people I knew with an ileostomy and when I answered none, she said ‘how do you know? If they’ve never chosen to tell you, you’d never be able to guess’. And that’s always stuck with me.
One of the biggest risks for me is catching a tummy bug and getting dehydrated. When you lose your bowel, you don’t absorb water or salts easily and therefore you can get dehydrated very quickly and deterioration is rapid. Last year this resulted in me being admitted with stage 4 out of 5 kidney failure and I was minutes away from needing dialysis – luckily for me the doctor listened to my plea to wait another hour and my super kidneys kicked back in! This has however left me with Chronic Kidney Disease (CKD). Throw in another few dehydration admissions, a bout of sepsis, a reoccurring infection and an operation to remove my belly button, and you would have a whistle stop tour over the last 5 years.
My body is an incredible thing though, it’s like the cat with 9 lives and it always amazes me how it can bounce back. I also think it’s incredible that it allows me to go to sleep on my stomach, automatically turns me over as my bag fills up in the night, and wakes me up when I need to empty it. Amazing huh?!
As for the mind, that’s your most powerful tool of all. I think a lot of people would have expected me to have some sort of breakdown by now, and I cast no judgement on those in similar circumstances that have, but I just seem to mission on. When you have no choice, you just have to keep swimming*.
*Disclaimer, I am no superwomen, everybody has bad days and is allowed to feel down in the dumps about how unfair life is sometimes, I am no different!
Despite a decade of poor health, I’ve continued to work as hard as I can in my chosen career, progressing to Director level this year which I am extremely proud of myself for. My resilience to what life has thrown at me, unfortunately not all medical related, has made me the person I am today.
I will keep taking about poo, breaking the stigma attached to ileostomy/colostomy bags (no, it’s not just the elderly that have them) and campaigning for disabled toilet access for people living with invisible illnesses. I am proud that we have come a long way over the last couple of years with more public figures speaking out about bowel disease. Talking about poo isn’t glamorous but we all do it, and the less people are ashamed to talk about it, the quicker people are likely to seek help when the notice something is wrong. That can only be a good thing. My inbox is always open for anyone wanting to chat.
Other than that, I am hoping for a more peaceful time in my 30’s and hoping that I avoid any more orifices being sewn up…!
Thank you so so much to Bex for sharing her honest story as a guest poster and sharing her thoughts and views in this piece. As I’ve stressed from the very beginning, this is a warm, empathic platform for people to share their stories, hopes, dreams, fears. Please do read Bex’s story and leave a comment if you’d like to and share this series if you know anyone it could help. Together we are making changes.