Clair’s Story

I was diagnosed with Crohn’s in 2011 and was petrified of needing a stoma as omg how embarrassing.

Years went on and I was fine a bit of a Dicky tummy but that was it.. well until 2017 when I wasn’t ok anymore. Had to try every drug going and although I thought I was ok I wasn’t I was slowly poisoning myself and surviving. 2018 came and it became a constant battle of morphine to eat and then only managing potato or crumpets. I got by by saying I had an illness and needed to live like that. I was told I needed surgery Xmas 2017 and wouldn’t even let surgeons in my cubicle. No way was I having a bag, the shame of it was just too much.

After 6 months of in and out of hospital on antibiotics and trying more concoctions of drugs I had literally lost the will to live. Constant pain always grey, no energy, my life was out of bed, work, home, kids to bed and sleep and that was a good day on bad days my son had to help me into bed and look after his little brother. The day I rang my mum and said I need to go to hospital was August 2019 and I’d been at the theatre in London with my youngest son, I still to this day can’t remember anything about the day other than passing ridiculous amounts of wind all day.

When I was taken into hospital one doctor nearly sent me home but I asked what my CRP was and it had quadrupled in the 3 weeks since discharge although I’d been on steroids and antibiotics. Scans were ordered and I was admitted. The severity of what was going on was kept from me so I could rest and recuperate but when they told me a week later I only had 4 days to live when I entered hospital I really did lose it emotionally.

They stabilized me and 6 weeks later I was deemed strong enough for the 9 hour surgery I needed to fix all the holes in my intestines, rebuild my stomach, unstuck the intestine from my pelvis by shaving the bone remove 3 feet of mouldy intestine and form an ileostomy. I had never wanted anything more at that point as them telling me how poorly I was allowed me to accept it wasn’t acceptable to live like I had been doing. I still hated my stoma and it took a lot to get used to but that was mainly psychological. Once I recovered from the surgery and was able to eat and drink I was able to see that life could be so much more than what I had been experiencing.

Fast forward a year and life couldn’t be better, I’m healthy most of the time, I spend time with my kids and friends, I go out, I’m back at work although part time, I’m living and loving life. I’m so proud of my stoma now as without Penelope (the name I gave her which is a story of its own) I wouldn’t be here, and if by the chance I’d have survived I definitely wouldn’t be the person I am now. I can’t believe I chose vanity over life for so long.

My message to anyone in a similar situation now or in the future is don’t let vanity win over living especially when if your body is at the point of needing surgery you probably don’t look to great as it is 😍

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