It is tough to choose the right starting point for this story of ‘my life with a stoma’. I suppose I should rewind the clock and begin from when I was diagnosed with Crohn’s Disease in 2004.
At age 12, I was as thin-as-a-stick, seriously unwell and malnourished. Therefore it comes as no surprise that I was admitted to hospital for 8 weeks (my first of many admissions). At this stage in my life I was new to understanding Crohn’s disease. I was also battling with M.E. – although looking back, I believe M.E. had been masking a lot of the symptoms of Crohn’s.
I missed 4 years of school and no-one believed I would return to my original year-group once I was well enough to attend classes again aged 15. But I proved them wrong and I sat my GCSE’s with my class; sure I took a reduced number but who needs 12 GCSE’s these days?
However it was during this time that another problem emerged. I was experiencing what can only be described as ‘leaking’. My Crohn’s was under control but the damage it had done to my colon, rectum and anus left scarring which caused these life-restricting and embarrassing symptoms such as leaking and a constant urge to go to the loo.
Looking back I have no idea how I completed my A-Levels. I would dash from the car to the loo before class and then tense my whole body through lectures in the hope I wouldn’t leak, before scuttling home again.
This had to stop. After various hospital visits and exploratory procedures I returned to see the Professor to see what else he would try. Out of nowhere he said that realistically the next step was to form a Stoma. He explained what a stoma was with little empathy but I think I zoned out – I was so shocked by this suggestion that I was silent the whole way home. Having a stoma had never crossed my mind.
We got a second opinion. This consultant was amazing and explained the options. He explained that having a stoma was possibly the best idea for me.
In August 2011, I said ‘yes’ to having a permanent colostomy. Walking out of the hospital after making that decision, I felt terrified but determined that it was time to live the life I deserved.
I had a meeting with the wonderful stoma nurse team before the operation to be marked up and to see the bags I would have to use. Afterwards I burst into tears. I think that I had been living in a bit of a naive bubble about life with a stoma and hadn’t realised how major the surgery was going to be.
In October 2011, at the age of 19 my stoma was formed. Humour definitely helped me through tough times after the operation – it is a long recovery process. I named my stoma Neville! No idea where the name came from but it helped so much and now all my family and friends refer to my stoma as Neville.
I chose to irrigate which has been brilliant in giving me a little bit more control over when Neville will be ‘active’ – although he still rebels and does his own thing at times! I also decorate my bags to brighten-up a bag change – plus it looks really colourful when I’m wearing a bikini.
I am now 23. A lot has happened in the 4 years since I had Neville. I had to have a further bowel resection last year due to numerous bowel obstructions - for 4 months I was on a liquid-only diet. I was in my final year at University and I had to put my degree on hold for several months recovery time. I had to continue my degree whilst all my friends had graduated. It was tough and I really didn’t think I would finish it. But in December 2015 I completed my final placement and I am now a nurse! Due to the nature of Crohn’s I know it can reappear at any time but all I can hope is that it allows me some good health for the start of my career.
Neville is with me for life. Luckily I love him (most days). I do have tough days with him though where he ‘plays up’ but overall he has changed my life for the better and given me a chance to have a future. I would never have been able to go to University without him. I would never have dreamt that I would qualify as a Paediatric Nurse without him. I would not have participated in a sky-dive without him. I would not have climbed Mount Snowdon without him. I could not have stood or walked any distance before I had him. Just the simple act of taking my dog for a walk is a real privilege.
Quite a lot has happened in my 23 years! Who knows what adventures Neville and I will embark on in the future?