Charlotte’s Stoma Story – “This surgery has given me my life back”

Hey! 👋🏻

My name is Charlotte & I have recently become the proud owner of a sparkling new stoma and really want to share my story with you on how much life has changed so far…

Living with Crohn’s disease

When I was 18, I was diagnosed with Crohn’s disease after a few years of investigations. Crohn’s effects everyone slightly differently but for me, this meant weight loss, frequent toilet trips, diarrhoea, loss of blood and as time went on, more and more pain. Over the past 12 years, I have spent a lot of time on steroids as well as trying all sorts of medications and IV treatments with horrible side effects and the worst thing for me was not really knowing if they are working!

This year; (with turning 30) enough was enough and I had got to a point where my quality of life was so poor. My Crohn’s disease had really taken control of my life. I have a 6-year-old and an amazing family/friend network and I was missing out on so many things which was also really emotionally difficult.

I went to a consultant appointment back in May this year with my partner and I just sobbed; pretty much telling him and my IBD nurse how poorly I ACTUALLY was.

For me; most of my severe inflammation with my Crohn’s was isolated to my large bowel with lots of narrowing – so hearing the words from my consultant on that day ‘having this operation could potentially be a cure for you’ was all I needed to hear to go ahead with a subtotal colectomy with end ileostomy- in other words removal of my large bowel/colon with the end of the small bowel then brought out through the abdomen and stitched on to the tummy. This then drains the waste/poo from the bowel into a stoma bag.

My stoma surgery

So 6 weeks later, in July I headed off to hospital for my surgery. During the lead up to the operation I spent a lot of time researching what my life might be like and following lots of people’s journeys to try and get my head around it. I’m glad I did this as I feel it helped me when I woke up with my shiny new stoma. The support from the NHS; from surgeons to stoma nurses was incredible and they just made everything feel normal. The first few days in hospital were tough, but the pain was manageable. I spent 5 nights in hospital in total – which included my 30th birthday and the Euros final! So the timing wasn’t ideal however my new life moving forward since my surgery has just been AMAZING.

Yes I have a little bag on my tummy and I am missing a major organ – BUT this surgery has given me my life back.

Since my surgery I’ve done simple things that lots of people would just take for granted, but I’ve found those things so special as I’d almost written off ever being able to do them again…Little things like drinking coffee, eating a meal and not being in pain, going away and not panicking about where the nearest toilet is!

My life now feels positive and I don’t feel like I have any limitations.

Having my stoma – named ‘Wilson’ has definitely made me stronger, I’ve been able to put on weight at last and enjoy my life pain free. There’s always a journey ahead with any form of IBD which I’m sure will have a few ups and downs on the way but it certainly feels like I’m on a positive happy journey at last.

Can’t wait to share more of my story with you all soon!

Charlotte xxx

@char.crohnsftwilson